January 2019
12/01/19 14:17
All good intentions for this website but they didn't last long. So much has happened since I last updated I hardly know where to start.
I guess the most dramatic thing was being diagnosed with a Pheochromacytoma. Big word and it was having a big effect on me and also required BIG surgery to extract the offending tumour.
Here are the notes I made afterwards for the Pheo. Support group website:
In my forties I was diagnosed with hypertension and began treatment, I didn't think I had any symptoms but my headaches stopped after starting medication. As I was fit, active and not overweight I asked my doctor WHY, just one of those things he replied.
About 5 years ago I noticed that sometimes I awoke wet with sweat, it didn't bother me so I ignored it but did mention it to my doctor at a routine check up.
4 years ago I developed Erectile Dysfunction, I asked my doctor WHY, just one of those things he replied.
3 years ago I consulted my doctor about my nocturia he decided it was my prostate and I was refered to a urologist. I was told I had an enlarged prostate (well most men of my age have) he wanted to do a biopsy to be sure it wasn't cancer, I rejected this as too invasive and went for monitoring instead.
2 years ago I was diagnosed as pre-diabetic, my blood sugar was only just in the pre-diabetic range so there was no action taken. I asked my doctor WHY, just one of those things he replied.
In December 2013 I fainted for the first time in my life whilst skiing, I had just started a course of Alpha blockers to help with my "prostate problem".
Then the sweating started during the daytime, I was constipated and felt lethargic, by September I was doubting that I had the energy to go skiing this season.
When I mention "my doctor", actually it was a succession of locums who just looked at the symptom I was presenting with at the time. So I changed to another more holistic practice that has a much lower turnover of doctors.
Within a week of seeing my new doctor I was diagnosed with a Pheo. The tumor was first picked up by ultrasound and then confirmed as a pheo. by 24 hour urine test. Thank god for a doctor who could join the dots and didn't always assume the hoofbeats where horses.
I was then refered to Professor Brown at Addenbrokes in Cambridge. Prof. Brown is the foremost authority on pheo. in the UK and I am lucky that I only live 6 miles away. I was admitted for a day for observation whilst starting blockade with Phenoxybenzamine.
That was 2 months ago and the blockade has gone well but of coarse I have had to suffer extreme fatigue and feeling faint when standing. For those who like the numbers I have gained 14 pounds in weight as I have re-hydrated, I am now 175 pounds. My lying systolic BP is now 145 but standing it drops to 85. Standing around in queues makes me feel faint but I am still managing to walk 2 miles a day.
My other symptoms have gone, no sweating, no constipation, no erectile dysfunction, no nocturia (I only get up once a night now)
My tumor is over 8cms so I will be having open surgery which is a nuisance as it will take longer to recover and I'll miss this years skiing season!!!!!
I will report back as soon as I can post op.
Well all went well and I was back skiing 5 weeks post op.!! The next year I had surgery on my shoulder as I kept dislocating it and the next year more surgery to fix the incisional hernia the first op. gave me!!!!
All in all quite a time I don't want to repeat.
I guess the most dramatic thing was being diagnosed with a Pheochromacytoma. Big word and it was having a big effect on me and also required BIG surgery to extract the offending tumour.
Here are the notes I made afterwards for the Pheo. Support group website:
In my forties I was diagnosed with hypertension and began treatment, I didn't think I had any symptoms but my headaches stopped after starting medication. As I was fit, active and not overweight I asked my doctor WHY, just one of those things he replied.
About 5 years ago I noticed that sometimes I awoke wet with sweat, it didn't bother me so I ignored it but did mention it to my doctor at a routine check up.
4 years ago I developed Erectile Dysfunction, I asked my doctor WHY, just one of those things he replied.
3 years ago I consulted my doctor about my nocturia he decided it was my prostate and I was refered to a urologist. I was told I had an enlarged prostate (well most men of my age have) he wanted to do a biopsy to be sure it wasn't cancer, I rejected this as too invasive and went for monitoring instead.
2 years ago I was diagnosed as pre-diabetic, my blood sugar was only just in the pre-diabetic range so there was no action taken. I asked my doctor WHY, just one of those things he replied.
In December 2013 I fainted for the first time in my life whilst skiing, I had just started a course of Alpha blockers to help with my "prostate problem".
Then the sweating started during the daytime, I was constipated and felt lethargic, by September I was doubting that I had the energy to go skiing this season.
When I mention "my doctor", actually it was a succession of locums who just looked at the symptom I was presenting with at the time. So I changed to another more holistic practice that has a much lower turnover of doctors.
Within a week of seeing my new doctor I was diagnosed with a Pheo. The tumor was first picked up by ultrasound and then confirmed as a pheo. by 24 hour urine test. Thank god for a doctor who could join the dots and didn't always assume the hoofbeats where horses.
I was then refered to Professor Brown at Addenbrokes in Cambridge. Prof. Brown is the foremost authority on pheo. in the UK and I am lucky that I only live 6 miles away. I was admitted for a day for observation whilst starting blockade with Phenoxybenzamine.
That was 2 months ago and the blockade has gone well but of coarse I have had to suffer extreme fatigue and feeling faint when standing. For those who like the numbers I have gained 14 pounds in weight as I have re-hydrated, I am now 175 pounds. My lying systolic BP is now 145 but standing it drops to 85. Standing around in queues makes me feel faint but I am still managing to walk 2 miles a day.
My other symptoms have gone, no sweating, no constipation, no erectile dysfunction, no nocturia (I only get up once a night now)
My tumor is over 8cms so I will be having open surgery which is a nuisance as it will take longer to recover and I'll miss this years skiing season!!!!!
I will report back as soon as I can post op.
Well all went well and I was back skiing 5 weeks post op.!! The next year I had surgery on my shoulder as I kept dislocating it and the next year more surgery to fix the incisional hernia the first op. gave me!!!!
All in all quite a time I don't want to repeat.
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