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Conn's Syndrome and Kidney pain

nikki_G
2 Recommendations

I was wondering if anyone one else with Conn's syndrome gets extreme kidney and flank pain. I have regular bouts of extreme pain and spend quite a bit of time in hospital but the doctors here do not know much about the condition and i am getting frustrated. I have had pain symptoms for 2 and a half years, that is besides other symptoms but i was only diagnosed in December last year. Can anyone help spread some light on the subject because i feel very alone at times and I struggle to get the doctors to understand how i feel. Most of them tell me i am to complex, give me morphine then kick me back out and that is not a good way to deal with my issues. Some doctors have even suggested i am faking it and this frustrates me more as i feel no one truely understands the depth of pain i am in.

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Exercise Tylenol Hyperaldosteronism Surgery Back pain Kidney stones Morphine Verapamil Pneumonia Anxiety Addison's disease Cortisol Spironolactone Dizziness Advil Aspirin Stroke Inspra Hypertension Weakness Pain Heart attack Edema Conn's syndrome Mental health Depression Diarrhea Polyuria

30 replies

waitinggame

Hi Addie,
I am waiting to find out if I have hyperaldosteronism and it's so frustrating. What I can tell you is that I am experiencing water weight gain that is so uncomfortable at times I only want to lay in bed. My stomach gets so distended I look pregnant. I feel like bugs are crawling all over me and my eyes itch like crazy! I was put on spironolactone and almost everything went away. But..I did experience horrible low back pain in the kidney area where the adrenal glands are. When I got off the spiro it went away in 2 days. I'm not sure why this happened as I have been on spiro 3 times and that's the first time it happened. I am waiting for my aldosterone test to come back but my potassium is normal. Any advice you can give ME would be great but all I can tell you in hang in there and push the doctors for what you know if true!! They are overworked and seem to not have the time to figure it all out. Thank God I have a friend who is a naturopathic doctor that has helped me tremendously..but she's in Seattle and I'm in Cali. If I don't get the answers from this new endo I may fly up to see her and have her run all tests.

tx_dave

Hello all,

Regarding the original question, I experienced terrible kidney flank pain when my conn's syndrome was untreated. There is much blood chemistry going on in that area, and the kidneys may have suffered damage from the high blood pressure which comes with hyperaldosteronism.

I take a large daily dose of spironolactone. Either it or another medicine called "Inspra" can be used to block aldosterone at the cellular level. This is treating the cause of symptoms rather than just treating the symptoms. It is not without risks due to its impact on potassium.

Regarding potassium, most doctors are not comfortable treating conn's, and spironolactone comes with precautions against taking potassium with it. Potassium in the bloodstream exists within a very narrow range. Too much, or too little, can subject you to a heart attack, stroke, or other misfortune. That said, it is quite possible that potassium will need to be lightly supplemented until an adequate dosage of spironolactone is prescribed. Frequent blood tests are necessary for safety if you take spiro.

I wish none of us had this dreadful condition. It directly impacts blood chemistry, and therefor can affect all areas of the body.

I am not a doctor, but feel free to discuss these things with your doctor. I certainly do with mine.

flowerspy

Nikki,

The same exact thing happened to me. I would like to help you with the exhausting steps if you want. Contact me at:
clangrall@gmail.com

You should be on potassium supplements and I am perplexed as to why your dr doesn't want you on them. A suggestion is Gatorade (a sports drink with electrolytes) It saved me for a year.

Also there's another support group at: http://health.groups.yahoo.com/group/hyperaldosteronism/

Dr. Grim is the main person who answers the questions- he's an expert on Conn's. One thing about this group is there are people suffering from biplasia (tumor on both adrenals) so they are really into the medical terminology and can be a little intimidating for new members. Otherwise Dr. Grim knows alot of endos all around the world and in particular Australia/New Zealand.

I hope this helps and wish you continued strength.

Flower SPy

nikki_G

Flowerspy
I have been diagnosed with Conn's Syndrome. It was my heart specialist that diagnosed it and a mri confirmed the adenoma on my left kidney. I live in Australia. I am on sprinolactone but have been told not to have potassium supplements. However every time I am in hospital I am put on a potassium drip because mt potassium levels are so low.

Hashithang

Hi,
I have Addison's Disease, Autoimmune Adrenal Insufficiency. Problems and symptoms are very simiilar. I constantly have kidney/flank pain too. And the doctors have no clue either, when it comes to the Adrenal Glands, they just don't know much about it, i feel for you, I am constantly having a lot of pain issues with it and everybody specialist and nurse has this look of cluelessness on their face. You are not alone.

flowerspy

Nikki,

That sounds like an awful lot medical problems...too many for such a young woman! Have you been diagnosed with Conn's? Do live live in America or abroad? There are some really good endo's in the WASH D.C/MD area as well as in Chicago, California. I'd be happy to ask my dr. some names for you.

I can tell you first hand from suffering at least 6 years with conn's that without a really good endo, you will experience very odd symptoms that can frustrate most drs. who are unfamiliar with the disease. When I had it, I felt like my body was slowly deteriorating, the new symptoms started adding up and it was overwhelming. I was very depressed and lonely.

Let us know how your appt goes with the endo. Ask a lot of questions about spironolacton and potassium supplements.

I'm so glad you keep your Mum's spirit inside you. She'll help you get through this rough time.

f.s.

nikki_G

Hi everyone it has been so long since i have been on here and i thank everyone for their input and sharing of their experiences. As of today I have still not had any luck with with specialists. I have seen so many now and they all have put me in the (TO HARD BASKET} but hopefully my new endo which i will see in 2 weeks will be better. I have been in and out of hospital and had 2, 24hour urine tests done. I have also been diagnosed with chronic everyday headaches and I have to have a endoscope and a colonoscopy because I have been bleeding from the bowel. My neuro has also found I have a problem with my vestibular nerve on my right side so I have had an injection in the back of my neck and more meds yipee (not). And my creatine level (muscle hormone) is so low and my progesterone(don't know if i spelt that right) is so high 5 times higher then the average 31 year old women. I have to have shoulder surgery because I have ripped the muscles and the tendons of my right shoulder from playing Lawn Bowls. And yes my stomach is very weak now I take acimax daily to setttle it. I was told because of my medications and the neumerous narcotics I've been on have damaged the lining of my stomach to what degree I don't know but the endoscope will show me. I am due to have that in 30days and I have to be admitted for the prep because my potassium level among others are so low that when they give me the cleansing fluid I will have to be on a drip because my body is unable to tolerate it. Apart from all that and being tired or the time and picking up every little bug I can still smile. Thank God I used to be a mental health worker and my mum gave me lots of strength before she died of MND in Feb. My mum is one of my greatest inspirers. I hope all goes well for those having surgery and take care.

MichaelBUS

I'm given to understand that this does occassionally happen. At NIH it is an inpatient procedure. They give you a local and narcotics so it does not hurt and you must stay immobile for two hours after the procedure. NIH keeps you overnite and even 24 hours later, it hurts to be driven home - although next time I won't wear jeans. It hurts for a few days, especially if you have bruising because they miss on the first try.

Others have this as an outpatient. I'm glad I'm not them.

GingerPeaches

MichaelBus,
Oh my goodness.
Have you researched how often this sort of thing happens?
Do you have to go thru the whole three hour process again?
Did it hurt? Were there any other complications?
I realize you have to be driven home, but can you move normally in a short time? How short?
I am so sorry this happened to you. I wish you the best.

MichaelBUS

AVS showed right adrenal was producing. However, because they did not put catheter in the right place to get adrenal blood on the left, they must redo the test to rule out bilateral hyperplasia. I am scheduled for Nov 16.

GingerPeaches

Hello,
I have Conn’s Disease, a tumor on my right adrenal gland. My surgery for adrenalectomy is next week. This week I do all the pre-op testing.
Sometimes I get sharp pains coming from the right kidney area out thru my stomach. Most of the time I get dull, but very sore, pains out of the same area but thru my back. At times, it brings me to tears. My husband will knead the area that hurts with his fingertips and thumbs or the heel of his palms. If he isn’t around, the pain expands up and down my back and over to my left side. My husbands kneading always helps. I am sore afterwards from his probing, but it is a good sore and better than the dull pain. I thought to mention this idea as I have not seen any posting for husband-kneading yet.
As for stomach problems, I am taking eight horse pills of potassium a day. I have to have them with food because my stomach has gotten so sensitive to them, I vomit if I don’t. This may be the reason Nicki G was told to not take them, in that she already has a too-sensitive stomach.
I also had extreme edema. If I put one ankle on top of the other for a little while and then removed it, I swear, I had a one inch deep indent. My husband and I were always in awe at how much water a body could retain. My regular doctor told me I had edema but did not prescribe any meds for it. I don’t know why. She just let it go. At the time, I did not know much about anything and let it go also.
When I was diagnosed with Conn’s and put on 300 mg Spiro and three more drugs (along with the list I was already on), I lost 20 pounds and no longer retain water like that. The Spiro and added drugs also helped me not urinate so much and the back pains lessened. However, the Spiro and new drugs gave me a side effect of coughing. I just found out, thru this site, there is another drug that can be substituted for the Spironolactone. My surgery is only 10 days away, so I am not going to suggest it to my doctor. I will stick it out. I would list the drug here, but I forgot what it was and I still don’t know how to go back to sites I was once at. I am new here.
For the blood and 24-hour urine test done by the endocrinologist prior to discovering my condition, I was on: potassium, anti-depressants, stomach medicine, anti-diarrhea, aspirin, five kinds of high blood pressure reducers (everything but the kitchen sink). My endo did not stop me from taking any medication before the tests. He said there was no effect. From the results of my tests, both blood and 24-hour urine, and the CT scan with the junk they injected in me and also made me drink, I found the endo to be right, in that the tests did not list any contradictions with my then-current meds.
I did not have an AVS done. My CT scan showed my left adrenal gland to be clear and in good working order. My right gland did not look that good and it had a .9 x 1.9 cm tumor on it. With my history and long list of drugs I was on, it was pretty much guaranteed the gland needed to be removed. Thru the course of insurance trouble, I ended up having four doctors/surgeons see the CT scan, etc., and they all recommended immediate surgery.
Thought I would mention that an Adrenal Venous Sampling is very important and should be done; however, if you have a good, clear CT scan with a minimum of 1 cm size tumor and good interpreters, and a history of symptoms, and blood and 24-hour urine tests with the high or low indications of Conn’s Disease, an AVS can be alleviated. Obviously, this is not 100% accurate, but 97% is a good percentage. If you do want an AVS and your doctor has not mentioned it, tell your doctor you want one.
I would like to send a “Thank you very much” to MichaelBUS for telling me about the AVS.
This is a great site. I wish I knew about it years ago. I wish the best to everyone.
Ginger Peaches

ladyrowdee

hi am wendy i have conns syndrome. i have pain on the left side of my kidney. i have a 7cm tuma. i was dignosed, 4years ago. my life as been hell 4 the past 16 years. being told it was all in my head. and i was not realy ill.it tuck me going into host 2 get ppl 2 take note .

KMKA

Anxious to hear about the AVS and how you make out. I have read minimal information about the test and am wondering about in-patient time and recovery time. Good luck over the next few weeks. I will be thinking of you and hope you make out okay. Sounds like you are finally coming down the home stretch of this crappy disease!!

MichaelBUS

After the CT came back, I was referred to NIH, which changed my meds and did retests on 24 hour urine and Saline Suppression. Without meds my baseline aldo was 9 and it went to 16 under testing, so an AVS has been scheduled for Sept. 14.

They took me off ACE inhibitors, Beta Blocker, Amelopedine and HCTZ (diruretic) and put me on Hydralazine (started on high dose, so I had tachycardia and headaches, they cut dose and inched it up so I feel better), kept me on Alpha Blocker (and doubled it) and put me on Verapamil - a calcium channel blocker that does not interfere with the test. After saline, I am back on HCTZ until Sept 7, when I go off for AVS.

After AVS, Spiro and a potassium sparing diuretic and hopefully no more hydralazine.

cathyliz59

Thank you for your encouragement, Flowerspy. I am trying to get in with a new endo. because the one I had ran these tests without informing me that I should discontinue some of my meds.

flowerspy

Hi cathyliz~

Call your endo. who should have a list of all the meds you are on. I had to take this test 2 times when I had Conn's, and I'm pretty sure I had to discontinue at least one med (sorry I dont remember which one). I think your endo will (should!) know if certain meds interfere.

Good luck...it sounds as if you've been through a lot. Hang in there...at least you are on your way to knowing the cause of your ailments. It took me 1 yr to determine which type of adrenal disease I had, and I too was very discouraged and depressed. It will get better once they know exactly the issue.

Flowerspy

cathyliz59

Does anyone know if certain medications can alter the results of the 24 hour urine test. I started having symptoms about 3 years ago. Actually started with hypertension 15 years ago. About 5 years ago started with low potassium issue. Was taking a diurectic for fluid retention so doctor assumed that was the reason for low potassium. However, diuretic did not seem to helpful for fluid retention so increased dosage which in turn increased potassium medicine. Increased dosage of diurectic saw no change. Potassium continue to fall after diurectic decreased last year. Also have been suffering from depression and severe anxiety. Last year blood pressure got worse uncontrolled on medication. Tried all kinds of different bp meds. without success. Cardiologist finally prescribed tekturna that works on the renin. Works better than any of the other meds but bp is very sporadic and mostly stays on the borderline level. I had Pneumonia last April and was hospitalized. Did chest ct and by chance detected a 1.5cm. adenoma on rt. adrenal gland. Began seeing endoc. last summer who did 24 hour urine and blood tests. One urine came back with very high cortisol. Retested twice with normal readings. Told to repeat this spring. After finding adrenal adenoma called endo who repeated the 24 hour urine and did a dexamethosone blood test. She did one blood test for aldosterone level. I was never instructed to stop taking bp med., potassium supplements, hormones, or antidepressant. I now understand that all of these drugs can alter the results of tests? Does anyone know of this? Thanks

MichaelBUS

They usually do the AVS after the CT, which is after the salt suppression test, which is after the initial blood work. One thing at a time. Usually to see an Endo you first do a 24 hour urine test (since exercise raises Aldosterone, don't do it while you are doing the test or the day before - which also raises the question of why they tell anyone with Conn's to exercise, it seems that would make the core problem worse - its called Primary Aldosterone with Secondary Hypertension for a reason).

To find an Endocrinologist, I went to my health insurer's web site and searched for them until I found one with an open appointment. It helps to do the 24 hour urine first so that you can cite results and not sound like a hypocondriac. I would think any Endo is up to speed with Adrenal disease.

I learned in my experience (I thought I had Cushings) to let the Doctor make the diagnosis.

MichaelBUS

I had a 24 hour urine that indicated a mass. I suspected Cushings and looked for an Endo. I found one at Howard U. Hospital. She ruled out Cushings with Saliva test and overnight blood test, but Low K (which had been found before) and 0 Renin indicated PA. Salt Supression test ruled out Essential Hypertension and CT scan found Adrenal Tumor on right side. Next stop is AVS at NIH, possibly as part of a clinical trial. I'm lucky to live in DC area, since NIH is nearby - although if I am selected for a study there will be a 7 to 10 day hospitalization with retesting of prior studies. The good thing is that they do the surgery if the AVS indicates that the tumor is hormonal.

The study is at http://www.clinicaltrials.gov/ct2/show/NCT00005927?term=nichd+Adrenal+Gland +Disorders&rank=6
The NIH site is http://www.nichd.nih.gov/health/topics/Adrenal_Gland_Disorders.cfm
Contact them and they will send a letter to you to take to your Endo, who will send in labs (including CT).

MichaelBUS

Be careful with Gatorade with regard to sodium and carbohydrate levels.

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