Discussions By Condition: Medical Errors

Missed secondary hypertension, primary aldosteronism

Posted In: Medical Errors 6 Replies
  • Posted By: rck213
  • December 4, 2006
  • 08:59 PM

I was diagnosed as essential hypertension 14 years ago. Had terrible intolerances and reactions to all classes of meds. BP marginally controlled with Maxzide 25 1/2 tab, higher dose caused muscle cramps.

In 2000 bp consistantly 160s/100s, tried several more meds with no improvement, lost weight, did strict DASH diet, BP continued to climb. In 2004 while on Maxzide had a serum potassium of 3.1 with routine labwork.
It was reported to me by mail that all my labwork was in normal range. That year I started having increasing fatigue and muscle weakness, sudden onset knee effusion without injury, increased incidences of headaches.

I switched primary docs because he was doing nothing except blaming me for my hypertension, that I just didn't want to take drugs, he ignored the fact my knee had been swollen for several months and my activity tolerance was tanking. I was 52 and he didn't even do an EKG, I had never had one.

New PCP did all labs and EKG, echo, had to play catch up as I really had little done by former PCP.
I had mild LVH, and mild hypertensive retinopathy. Again I was told I needed to get control of the BP or stroke.
Routine lab showed serum K of 2.9, I was not on meds.
I was constantly tired and achy. Was sent to Allergists, Rheumatologist and GYN. Diagnosed with Fibromyalgia and Osteoarthritis, enviornmental allergies, perimenopause.

Potassium difficult to get to normal range on a high potassium diet, eventually needed supplements at increasing doses of oral K (up to 80 meq per day) PLUS BP readings through the roof at 220/110 at times, average 180-190/100s.

Serum K continued to be a problem, I requested nephrology referral which was delayed for several months while PCP tried more diuretics and meds to control my BP, which didn't work and threw me into terrible muscle cramps, hand cramps, foot cramps.
I refused to take any more meds and finally got the referral.
Nephrologist did Aldosterone/Cortisol/Renin blood test showing high aldosterone, which sent me on a three week rush of tests that correctly diagnosed me as Secondary Hypertension caused by an aldosterone secreting adrenal adenoma on the left side.

I have had surgery, (6 wks ago) and now am normotensive and have normal electrolyte balance.

I lost almost two years of my life. I had been working 4 per diem jobs and kept cutting hours till I didn't work at all. My body hurt constantly, I didn't know what it was like to be pain free. I basically layed on the couch for months, any activity was an effort. A Dr appt or grocery shopping was all I could do in a day. I had 56 Dr appts last year and about 50 this year with no one discovering the real cause of all my problems.
No help was offered to me at all. Told to adapt to it, I had fibromyalgia, that is part of it, I needed to cut down. I was "getting older" and in "perimenopause" I probably would never have the energy I once had.

I have no pain now, I have energy through the roof, I can exercise, clean cupboards and closets, go shopping, all in one day. I go from one activity to another without even thinking about it when before even taking a shower was a big effort.

I find through research that few physicians think of secondary causes of hypertension and that is a shame.
Research shows that up to 15% of drug resistant hypertensives could have hyperaldosteronism.

I cannot get the two years I was so sick back. Hopefully I did enough through diet and supplements that I didn't do too much damage to my body with the very high pressures. Can't help but think my life expectancy has been shortened somewhat by this misdiagnosis.

Reply Flag this Discussion

6 Replies:

  • i am 35 and have hypothyroidism.I have had all the same symptoms as you have muscle aches fatigue weak increased urination.Also had pacretitis headaches,moodswings,achne lots of pain in upper ab and flank area.My adolsteron is up and i do have an adnoma of lt adrenal gland and a nodule in my thyroid.I see the endocronlogist next week. what would you recommend me asking my doctor ro do for treatment?I feel like crap and have for about 6 weeks now.Please help
    sunshine06 1 Replies
    • December 8, 2006
    • 04:39 PM
    • 0
    Flag this Response
  • This is for Sunshine There is a very good site about thyroid diseases on About .com. I had a follicular adenoma that had to go because of the incertainity of it's quality. It was not cancerous and I have only 1/2 of my gland left.Educate yourself about it and you will know what to ask to the drs. http://thyroid.about.com/ They also have a very active forum . Good luck and let us know how it goes. Menow
    Anonymous 42789 Replies
    • December 9, 2006
    • 03:43 AM
    • 0
    Flag this Response
  • Wow, I feel like I just read about me. They did a 72 hour or was it 48, any way, a urine assay, but I was still smoking then, and I heard it can throw off results. It came back normal. As usual. I'm the most normal abnormal person I know.:) Thanks for your post. I'm glad your arre doing so much better now! Hopefully I will be joining you soon. And menow, thanks for the info about the thyroid site. Jane
    almostanurse 7 Replies
    • December 9, 2006
    • 06:29 AM
    • 0
    Flag this Response
  • To Sunshine Do you have hypertension? Why did they test aldosterone levels and how did they find the adrenal adenoma? Are you on any meds? There are several causes of hyperaldosteronism, mine was luckily caused by the one nodule on my left adrenal gland. My thyroid function was normal although I exhibited signs of hypothyroidism. Problem was I wasn't referred to an endocrinologist by my PCP, I kept being told I had fibromyalgia, chronic fatigue syndrome, perimenopause. NO ONE LOOKED for any causes of my uncontrolled hypertension ,low potassium levels, increasing muscle weakness and fatigue. You need to research as much as possible about your conditions, be aware of what tests have been done, why they were done and what the results were so you can be fully informed and ask the appropriate questions.There is also a hyperaldosteronism support group in Yahoo Groups. People can have nodules on the adrenals that do not produce any hormones and are not a reason for concern.There are also people who have nodules on multiple endocrine glands, usually hereditary.Hopefully you will be seeing an endocrinologist who is familiar with and has the interest in seeking out all possible causes of your condition.
    rck213 3 Replies
    • December 9, 2006
    • 04:33 PM
    • 0
    Flag this Response
  • Your posting was like replaying my life over the last 15 years! I was first diagnosed with essential hypertension in 1991 after my BP shot up without explanation. Several doctors told me that because I am a middle-aged African-American male, I must exercise, control my weight, salt intake, etc. They did not seem to believe that I was already exercising and had been salt-free for years. Lost weight but bp climbed.My BP was never stabilized and I had to accept 160+/100 as my norm. More meds, BP resistance, and sseveral incidents of hypokalemia led to atrial fibrillation. More meds, changed doctors & specialists, no improvement. Strange condition developed: bp in right arm 20-30 pts higher than left arm. Told that the condition is normal for some people. More meds with no improvement.I became constantly fatigued over time, sufferred several incidents of a-fib, was cardioverted in 2001 and again in 2006, had a cardiac ablation, and had a major episode of uncontrollable HTN in 2008. Finally sent to an endocrinologist who easily diagnosed Conn syndrome (bilateral hyperaldosteronism) following several tests. There are three times the number of adenomas on my riht glamd as on my left gland. Does this explain the difference in bp in each arm that I was told was normal? Reduced from 12 meds/day to 4 meds/ day. More energetic now. Starting to feel stronger. I suffered too long and am surprised how many doctors missed the predictable symptoms of resistant HTN, hypokalemia, and fatigue.I am fortunate that I did not have a more serious cardiac event due to years of uncontrolled BP. My heart is enlarged and the new medications have caused significant weight gain. However, my BP is 127-140/60-72 in spite of weight gain. Lessons learned: Doctors are not very aware of Conn syndrome and resort to treating symptoms rather than seeking a cause, especially if you are in a traditionally high-risk group. Cardiologists need to work more closely with endocrinologists when HTN is resistant to medication.
    Anonymous 42789 Replies
    • January 19, 2009
    • 11:52 AM
    • 0
    Flag this Response
  • rck213, thank you so much for your post! Yesterday a new pcp suggested Hyperaldosteronism may be the cause for all my husbands symptoms he has been suffering from. After reading your post I again see hope because this last year has been filled with helpless hopelessness and seeing him suffer has made my heart weep. Thank you thank you thank you.I was diagnosed as essential hypertension 14 years ago. Had terrible intolerances and reactions to all classes of meds. BP marginally controlled with Maxzide 25 1/2 tab, higher dose caused muscle cramps. In 2000 bp consistantly 160s/100s, tried several more meds with no improvement, lost weight, did strict DASH diet, BP continued to climb. In 2004 while on Maxzide had a serum potassium of 3.1 with routine labwork.It was reported to me by mail that all my labwork was in normal range. That year I started having increasing fatigue and muscle weakness, sudden onset knee effusion without injury, increased incidences of headaches. I switched primary docs because he was doing nothing except blaming me for my hypertension, that I just didn't want to take drugs, he ignored the fact my knee had been swollen for several months and my activity tolerance was tanking. I was 52 and he didn't even do an EKG, I had never had one. New PCP did all labs and EKG, echo, had to play catch up as I really had little done by former PCP.I had mild LVH, and mild hypertensive retinopathy. Again I was told I needed to get control of the BP or stroke.Routine lab showed serum K of 2.9, I was not on meds.I was constantly tired and achy. Was sent to Allergists, Rheumatologist and GYN. Diagnosed with Fibromyalgia and Osteoarthritis, enviornmental allergies, perimenopause. Potassium difficult to get to normal range on a high potassium diet, eventually needed supplements at increasing doses of oral K (up to 80 meq per day) PLUS BP readings through the roof at 220/110 at times, average 180-190/100s. Serum K continued to be a problem, I requested nephrology referral which was delayed for several months while PCP tried more diuretics and meds to control my BP, which didn't work and threw me into terrible muscle cramps, hand cramps, foot cramps.I refused to take any more meds and finally got the referral.Nephrologist did Aldosterone/Cortisol/Renin blood test showing high aldosterone, which sent me on a three week rush of tests that correctly diagnosed me as Secondary Hypertension caused by an aldosterone secreting adrenal adenoma on the left side. I have had surgery, (6 wks ago) and now am normotensive and have normal electrolyte balance. I lost almost two years of my life. I had been working 4 per diem jobs and kept cutting hours till I didn't work at all. My body hurt constantly, I didn't know what it was like to be pain free. I basically layed on the couch for months, any activity was an effort. A Dr appt or grocery shopping was all I could do in a day. I had 56 Dr appts last year and about 50 this year with no one discovering the real cause of all my problems.No help was offered to me at all. Told to adapt to it, I had fibromyalgia, that is part of it, I needed to cut down. I was "getting older" and in "perimenopause" I probably would never have the energy I once had. I have no pain now, I have energy through the roof, I can exercise, clean cupboards and closets, go shopping, all in one day. I go from one activity to another without even thinking about it when before even taking a shower was a big effort. I find through research that few physicians think of secondary causes of hypertension and that is a shame.Research shows that up to 15% of drug resistant hypertensives could have hyperaldosteronism. I cannot get the two years I was so sick back. Hopefully I did enough through diet and supplements that I didn't do too much damage to my body with the very high pressures. Can't help but think my life expectancy has been shortened somewhat by this misdiagnosis.
    hope09 1 Replies
    • September 12, 2009
    • 02:50 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.