New to group -diagnosed 1 month ago

[Guest guest]

First let me say what a relief it is to have found this group. The stories here and on the NORD Conn's syndrome discussion site have made me feel sane again, because all the diverse symptoms I've had for so long never made any sense to me, and there they are, one after another.Here's my history: I am a 67 year old female, who has had a very low potassium count for about 25 years. When I would ask why I was so low, the answer was always a shrug of the shoulders and upping my potassium prescription until I was taking 80 mEq k daily, but without

explanation.I have had high blood pressure for over 20 years, but it was controlled with medication, until about a year ago. Also, around 7 years ago I was diagnosed with diabetes. My A1C level was 5.9 when measured last July. It has never been higher than 6.2 and is under control.Starting last year my blood pressure started taking off like a rocket. After trying everything diet wise and continually having the BP monitored and my medications adjusted I would still get readings between 183/94 to 226/106. Needless to say I was alarmed, but my doctor and the blood pressure clinic had no explanation. They just kept increasing my medications, yet it was having no effect. This was when I turned to the internet and diagnosed myself. I found a web site that said that if you have hypertension that can't be controlled by medication and also have low potassium, check your aldosterone level. My potassium level was 3.8mEq/L (3.5 - 5.3) only

because I took potassium pills, without which who knows how low it would have been?My doctor actually screamed at me over the phone about wanting the aldosterone test, but in the end she gave in and ordered it. On 7/7/10 the test came back and my Alb/Creat Ratio was 300.1 ug/mg (normal = 0.0 - 29.9). Renin level, in a subsequent plasma test, was low at 0.39ngMLhr (normal 0.25 - 5.82)I was sent to an endocrinologist who ordered a CT scan, and found nodules on both adrenal glands. A 1.2 cm on the left and a 1 cm on the right gland. Because both glands are affected removal is not advised, so these must be controlled with medication.I began taking 75 mg of Spironolactone at bedtime, and the affect was almost immediate. I had energy again, could sleep at night, my blood pressure dropped and a whole host of other symptoms lessened. Measuring my BP is difficult for me. I can get readings of 148/84 and yet my doctor can get readings of

128/75. My readings are always higher taken on an automatic cuff machine.While my medications still need to be worked out and fine-tuned (I think I may need more Spiro as many symptoms are still here - just less) and the endocrinologist has taken me off Potassium, a whole other problem has risen up and that is kidney damage.My blood creatine level has steadily risen from 0.90 on 7/7/10 to 1.21 on 10/2/10 (normal is <1.11) and my GFR has been falling to 44 currently (normal 60>). BUN is currently 19 (normal 10-20 mg/dL). Sodium is 139 and is in the normal range. My cholesterol is 163, with LDL @88 and HDL @59.I will see a Nephrologist on Monday Oct. 4, to see about the damage to my kidney's. Since so few doctors really seem to know anything much about Conn's, I'm not sure how to approach this initial meeting. Another interesting thing has happened, which is that I had a random glucose blood test last

week, taken about 2 hours after eating, and it came back at 106. Could most of my diabetes have been due to Conn's?For me this last 3 months have been a crash course in trying to understand what all the tests mean and what I can/should do, as I do not have a medical background. My endocrinologist says I sound like a 1st year medical student - I don't think that was a compliment - but all those doctors need to remember that I diagnosed myself and I'd never even heard of Conn's or hyperaldosteronism before.This letter is so long already, but if it's of any help to anyone I would be glad to talk about the difficult road to getting a diagnosis and all the crazy symptoms involved. Meanwhile, a bit of my sanity has been recovered, but this journey is far from over.Dianne