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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.

Explore topics in this discussion:

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

ADO

Hi Nikki G my name is Addie and I have been "diagnosed" with Hyperaldosteronism. But It has taken several years to get that far. I was also told that there was nothing wrong with me but in 2008 a nurse suggested to my primary that I be tested. The primary had no idea how to treat so he sent me to a Kidney Specialist and a Blood Specialist who together decided that I needed large amounts of potassium and large amounts of spirolactone. This did not last long because I went into Renal Failure and had to be hospitalized. Now I see an Enocrinologist who has stopped the Spirolactone (in order to re-test) and lowered the potassium to 1/8 of the original dose. After saying all of this, I wanted let you know that you are not alone. Yesterday, was a very bad day for me as I to was in so much pain ; that it hurt to move. All of my pain was in the same region as yours. I have had slight pain before but yesterday was excruciating. My new doctor also stopped the pain meds that I was on. So yesterday I had to tough it out but spent most of day crying. And like others, I also have periods of weakness, tingling in extremities and several other symtoms. I was told by the 1st primary "that it will get alot worse before it better". And believe me, it has and I know that the worst is yet to come. Please, you don't have to take my advice but the 1st thing you need is very good Enocrinologist who has knowledge of Conn's. They are hard to find. Don't give up!!! I found my wonderful doctor my accident. I will add you to my prayer list. Remember together we are better.

KMKA

Hello all,
I stumbled on this site by accident while trying to find out as much about Hyperaldosteronism as possible. I have spent the last few days reading all of the entries and crying my eyes out. I have known that I have a right adrenal adenoma for about eight years. I have been on aldactizide and several other blood pressure meds for years with no issues. Three months ago I had an episode where I thought that I was going to pass out. Was taken to the ER and all that was found was a critically low potassium level. They gave me some IV potassium and sent me on my way. Several similar attacks later, I am now being diagnosed with primary hyperaldosteronism. I tried to work and live my life normally for the first few weeks. Wondered why I had to sit down all of the time and rest in between normal activities like drying my hair and getting dressed. I am only 43!!
I have now been out of work for a month and do not seem to be getting any better. Can someone tell me what it takes to lead a normal life again? I feel like I am living the life of a patient and I don't want that!!! I have teenagers and a busy, active life. Would really appreciate any help and advice that anyone can give!!!

ADO

If you need to take a break; Take it. All I know is how I have to deal with it but if any of this helps you I will gladly share. I got some of info from Flowerspy. (1) Take the breaks (2) I now drink more smart water or gatorade ,at least a bottle a day (3) trying to eat more health conscience (4) find a good enocrinologist with some knowledge ; mine has helped tremendously (except he did tell me not to drink sodas) which that in itself is a challenge. But mostly, if you are having a bad day, rest is the option ;at least for me it is. When I am experiencing the lower back (kidney) pain sometimes I will stay in bed which I know is not good but sometimes the pain is a little much to deal with and my doctor did say to only take tylenol (which does not help at times) The Main thing is to get a knowledgable enocrinologist and follow his advice.As I have said before,I have suffered for quite a few years until I found this doctor. Hope your days get brighter. Have faith.

nikki_G

Thanks Addie and KMKA for your replies. As of yet I have not found a good endocrinologist but my gp is trying to find me one. I am sorry but glad to hear that you both feel the same as I do and I am going to print this out and take it to my doctor if that's ok so then next time I am in hospital they might have a bit more understanding of the issues that we face. KMKA I am 30 years old and I have 3 young children and I myself had to give up work because i get weak. I have been taking Chia seeds which is i find helps a little bit because since i have been on it i have had a lot more energy and my potassium level has risen a bit.Thanks for the prayers Addie and i will do the same for both of you. I live in Australia where do u both live?

flowerspy

nikki G-

I'm getting on this dialogue a bit late, but want to help if I can. There is a web site: yahoo:http://health.groups.yahoo.com/group/hyperaldosteronism/ The guy that runs it is named Dr. Grim and he's studied with Conn's endo's all over the world. He's knows a bunch in Australia--so contact him and hopefully he can help. If you have been diagnosed with this--drink gatorade like its water- your electrolytes affect EVERYTHING, the more potassium you save the better you will feel. Also- avoid salty foods as much as possible (its hard I know) but you will feel heaps better if you do. You have a disease where you retain sodium/water and this can make you feel sluggish and heavy.

The most important thing is to get that endo. --making sure he/she is familiar with Conn's. Very few Drs know what this is. Some endo's are unsupportive and focus on your physical ailments only, it helps if you can find one who is aware of the emotional battles Conn's brings.

Check out my blog for more tips living with this disease:http://hyperaldosteronism.blogspot.com/

I wish you well ~Flower spy

flowerspy

nikki- I forgot to mention, I experienced horrible back/kidney pain as my disease progressed. I opted for surgery as I was a good candidate (no hyperplasia, thank God) and had it back in March. I am symptom free less 6 meds, and have much energy. The only pitfall is I need downtime after strenous activities...other than that- I feel like a miracle, I was very depressed and listless on Conn's
For back pain: Hot baths with dead sea salts and lots of advil. Take breaks and be kind to your body and soul.

Peace-F.S.

flowerspy

kmka-

Hi, I have had your symptoms and know exactly what you are going thru. Eight yrs dealing with this disease is a long time, so pat yourself on the back of for your perserverance and strength. Did you ever have an adrenal vein sampling? I ask this as it will determine if the tumor you have is individually overproducing the aldosterone or if both adrenals are. If it's just one, you are a candidate for surgery to have the tumor/gland removed. I did back in March, and I am living proof of no more Conn's-- I no longer have hi-blood pressure, low potassium, migraines, fatigue, polyuria, depression, back pain...I could go on. I stopped taking 6 meds the day after surgery.

Now-as far as daily life with Conn's, you have to drink loads of gatorade, avoid salty foods, no soda and I suggest some sort of work out regime- even tho you are exhausted. You want to keep your heart in check due to the hi-blood pressure as it's easy to suffer more problems. Arrythmia is very bad, so make sure Dr. is on top of your meds. You should be on potassium supplements so you don't end up in the er again-so ask your Dr. Depression is easy to sink, and altho this is a personal issue-I went on anti-depressants because honestly, I felt suicidal dealing with Conn's. Do you have a good support system?? It is crucial that you do-- at least have one friend to lean on and be there emotionally when you are down and out. Sometimes families don't understand how bad you feel when they need you for themselves.

I hope this helps, and feel so bad that we all here on this site have had to suffer with such a debilitating disease. Safety in numbers-sharing tips and info is the only way to get thru.

All the best/Peace-F.S.

karind

Hi there - I have been following your posts, and wanted to chime in. I was diagnosed with Conn's last summer, - for many years, I had uncontrollable HBP and muscle twitching, headaches, dizziness, and fatigue. Once the BP was out of control with 3 diff. meds, my PCP referred me to a nephrologist and confirmed with a CT scan and an adrenal vein sampling. After discovering the tumor, I had a right adrenalectomy and my BP was back to normal in 4 days - and all my symptoms disappeared. I credit the incredible doctors that I had in Boston to do the right tests and ask the right questions. My PCP had only heard of the disease in passing - it will take an expert to get the right care. I have a great surgeon if you are interested! in boston of course. Best of luck!

KMKA

Thank you all for your very helpful advise. This site and all of you have been a godsend, knowing that I am not alone in all of this. I am about 45 minutes outside of Philadelphia, Pennsylvania. Would anyone know of a Conn's expert in this area? My endo has heard of the disease but does not seem to know how to aggressively manage it. Also, can anyone shed some light on how to deal with the anxiety. Never had panic issues or anxiety before but boy, are these symptoms rocking my world. Is this normal? Are there some meds that work better than others? Could I expect the endo to prescribe or should I actually see psych? One last request for advice, if I may. Can someone describe their experience with the adrenal sampling. Just wondering what I am in for.
Thank you all so much!!! You will never know how much comfort I find in the advise and kind words. I hope that in the near future that I can pay it forward. You are all in my prayers.
Karen.

nikki_G

Thanks for all the replies, I have not had a adrenal vein sampling as they do not do this in my country (not cool) but I have started drinking Gaterade as I am willing to do anything. Thanks flowerspy for the website it was most interesting. And just if anyone wants to know I used to be a mental health worker before i had to give up work and I can tell you I have used all my tools to stop me from getting down and I do believe that antidepressents can be a big help. I am blessed I have a supportive familiy even though that dont understand how drained I get so easily they help me out. I was wondering if anyone had other problems because I have now got a left vestibular nerve problem which means I lose balance and fall down and I suffer from Chronic Everyday Migraines and I have had 12 kidney stones in 2 and a half years. And I also have have low heamogloben (yes I can't spell) and I have to go for camera surgery to see if they can find something wrong. Yes and on top of this I now have a problem with my stomach and it hurts to eat so I have been eating 6 tiny meals a day and I have lost 9 kilos in 12 days. I know it sounds like lots but that is what is going on with me, it never seems to end it's like one specialist after another and i just would like some answers, So much money I've laid out for not many answers and much more questions.

Funny that you say to be on potassium supplements because I was told not to take them.

MichaelBUS

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

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

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.

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

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

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.

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.

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!!

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 .

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

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