conns syndrome

[subrod australia]

I have conns syndrome I found out 11 years ago after 5 years of tests CT scans etc and lots of hospitalization

[bmw_girl]

subrod australia wrote:

I have conns syndrome I found out 11 years ago after 5 years of tests CT scans etc and lots of hospitalization

Hi - I had just found out I have Conn's syndrome back in April or May '06. You can see my post on the other Conn's syndrome forum where I posted to someone else. How are you now? What medication are you taking? I am taking Spironolactone which have given me awful side effects, but my doctor says I have to take the medication because the side effects are not life threatening. Sorry for the questions, but this is new to me and I haven't found another person online with this disorder.

If you want, you can email me
[e-mail]
I would really appreciate it

[andrew]

i diagoned with conns syndrome about 20 years ago.it took about 5 years for a ct scan to indicate the presence of a growth on one of my adrenal glands.i proceeded with the surgical removal of both my adrenal gland and also the growth. in a short period of time my blood pressure dropped to normal levels.

my email address is [e-mail]

[bmw_girl]

andrew wrote:

i diagoned with conns syndrome about 20 years ago.it took about 5 years for a ct scan to indicate the presence of a growth on one of my adrenal glands.i proceeded with the surgical removal of both my adrenal gland and also the growth. in a short period of time my blood pressure dropped to normal levels.
my email address is [e-mail]

Hello. How are you? I did get an email from you a while ago and didn't realize it was you! I'm sorry about that. I will send you an email soon.

[blondie]

hey bmw_girl:) hope you're feeling better~ I'm 23 and have been diagnosed with androgentic allopecia and am curious to hear your thoughts on Aldactone therapy? My dermatologist is suggesting it as a txtmt option and I'm extremely cautious due to its reputation of adverse side effects... What was your experience?

[bmw_girl]

blondie wrote:

hey bmw_girl:) hope you're feeling better~ I'm 23 and have been diagnosed with androgentic allopecia and am curious to hear your thoughts on Aldactone therapy? My dermatologist is suggesting it as a txtmt option and I'm extremely cautious due to its reputation of adverse side effects... What was your experience?

Hi blondie - Do you know what dosage he/she will be giving you if you decide? I'm on 50mg. The only thing it will more than likely do to you is cause irregular menses - this doesn't happen to everyone. I have irregular menses now, but I can live with it. I think my problem is I am hormone sensitive, but again, I can live with it. If you were diagnosed with AA, the Aldactone would be perfect for you ;-) It HAS thickened my hair (it was thick to begin with), but it has thickened more. Also my nails grow faster and my hair grows faster since being on Aldactone. If you want to get in touch with me, my email address is [e-mail]

[Sue W]

I have a small tumour on my left adrenal gland and am awaiting surgery. I have had high blood pressure for approx 11 years, with 1 angina attack and 1 stroke. I am now only 45years old.I was told after my stroke and a ct scan that they have found a tumour. I am on spironolactone 50mg once a day plus various other tablets but I feel normal again.I will be having my surgery within the next 2 months and would like to know what it will be like recovery etc. I have had no side effects at all other than feeling really good. I live in New Zealand and have been told it is very rare this type of tumour.Thanks any help would be great.

[bmw_girl]

Hi Sue
I have a small tumor as well on my left adrenal gland. I have also had high blood pressure for years. My doctors decided not to do surgery - I don't know why. I have to have a CT scan done yearly. I used to have them done every 6 months. Yes this is VERY rare. I cried when they first found the tumor and said it was rare. I am also on Spironolactone 50mg. If you want to email me, feel free to.

[e-mail]

[Sue W]

Hi bmw-girl. You should perhaps ask your doctors why they will not operate.
Do you feel better since being on spironolactone?
Ask ask ask...They should give you some answers.
Sue

bmw_girl wrote:

Hi Sue
I have a small tumor as well on my left adrenal gland. I have also had high blood pressure for years. My doctors decided not to do surgery - I don't know why. I have to have a CT scan done yearly. I used to have them done every 6 months. Yes this is VERY rare. I cried when they first found the tumor and said it was rare. I am also on Spironolactone 50mg. If you want to email me, feel free to.
[e-mail]

[Jill W]

Here's one from a veteran!

I was diagnosed in 1969 at the age of 29 when my blood pressure went up to 260/150. I was told I had 'malignant hypertension' but it could be Conn's. Diagnostics in those days were not as they are today, no CAT scans. IVP, blood tests and long term urine collections didn't show anything and explorative surgery was considered too risky. It might not be Conn's anyway so why take that risk?. With young children, it was one I wasn't prepared to take. In those days BP drugs were not good and carried many side effects. They just didn't work so I was put on ALDACTONE. It worked but my kidneys were badly affected so it was stopped. That was in England. I emigrated five years later to Australia.

About ten years ago, in Sydney, I was sent for more CAT scans and a 'new' Selenuim scan. No tumours found. Then followed Adrenal Vein Sampling , the diagnosis, Bi-lateral Adrenal Hyperplasia. My doctors refer to it as Conn's, the thinking being that we've all got tumours but some are too small to show up on scans. The end result was they couldn't operate anyway because both adrenals were involved. Besides, I'd had the condition for a long time and it was too risky at my age to remove both adrenals.

I was put back on to Aldactone. I'd been on other 'fluid' pills but the BP was still too high. I started on 100mg. It affected my kidney function again. Gradually it was reduced to 50mg then 25mg. It still affects my kidney function a little so I have regular tests.

I have found through trial and error a compromise. Undoubtedly Aldactone has the most effect in reducing my BP but the side effects are a problem. I now take 25 mg in the hot weather (and it gets pretty hot here) and 37.5 in winter. The reason for this is that I now live north of Sydney on the coast where it is few degrees hotter and extremely humid. Copious sweating causes dehydration. This causes a sudden drop in BP. Good in theory but for one who has lived 38 years with high BP, low BP is scary. I can't stand up and have to lie down because of the dizzyness and palpitations. I can cope on 25mg in the hot weather.
In the winter which can get quite cold here my BP shoots up and I have to raise the Aldactone to 37.5. Even this is not enough but any more and the kidneys start playing up.
I hate even the smell of those pills but it's the price of life.

Anyway, I have survived long enough to become a grandmother and great-grandmother when I'd thought I'd be lucky to make it to 40.

I wish I could have had surgery in the beginning. Good luck to those of you who can now because of better diagnostics and surgical techniques. I hope it works out well for you.

To the others, who like me are stuck with medication for life, hang in there. The medication might be hard to live with but the alternative is worse!

[bmw_girl]

Jill W wrote:

Here's one from a veteran!
I was diagnosed in 1969 at the age of 29 when my blood pressure went up to 260/150. I was told I had 'malignant hypertension' but it could be Conn's. Diagnostics in those days were not as they are today, no CAT scans. IVP, blood tests and long term urine collections didn't show anything and explorative surgery was considered too risky. It might not be Conn's anyway so why take that risk?. With young children, it was one I wasn't prepared to take. In those days BP drugs were not good and carried many side effects. They just didn't work so I was put on ALDACTONE. It worked but my kidneys were badly affected so it was stopped. That was in England. I emigrated five years later to Australia.
About ten years ago, in Sydney, I was sent for more CAT scans and a 'new' Selenuim scan. No tumours found. Then followed Adrenal Vein Sampling , the diagnosis, Bi-lateral Adrenal Hyperplasia. My doctors refer to it as Conn's, the thinking being that we've all got tumours but some are too small to show up on scans. The end result was they couldn't operate anyway because both adrenals were involved. Besides, I'd had the condition for a long time and it was too risky at my age to remove both adrenals.
I was put back on to Aldactone. I'd been on other 'fluid' pills but the BP was still too high. I started on 100mg. It affected my kidney function again. Gradually it was reduced to 50mg then 25mg. It still affects my kidney function a little so I have regular tests.
I have found through trial and error a compromise. Undoubtedly Aldactone has the most effect in reducing my BP but the side effects are a problem. I now take 25 mg in the hot weather (and it gets pretty hot here) and 37.5 in winter. The reason for this is that I now live north of Sydney on the coast where it is few degrees hotter and extremely humid. Copious sweating causes dehydration. This causes a sudden drop in BP. Good in theory but for one who has lived 38 years with high BP, low BP is scary. I can't stand up and have to lie down because of the dizzyness and palpitations. I can cope on 25mg in the hot weather.
In the winter which can get quite cold here my BP shoots up and I have to raise the Aldactone to 37.5. Even this is not enough but any more and the kidneys start playing up.
I hate even the smell of those pills but it's the price of life.
Anyway, I have survived long enough to become a grandmother and great-grandmother when I'd thought I'd be lucky to make it to 40.
I wish I could have had surgery in the beginning. Good luck to those of you who can now because of better diagnostics and surgical techniques. I hope it works out well for you.
To the others, who like me are stuck with medication for life, hang in there. The medication might be hard to live with but the alternative is worse!

Jill - Thank you so much for that :-) I think I will be one of those people that will be on the Spiro for the rest of my life. How many years have you been on Spiro? And when do you know when the Spiro is affecting the kidneys? For some reason I'm afraid of it causing more tumors and affecting my Liver.

[Sue W]

Well hi there,
I'm going in for my surgery on 1st of August, Carnt wait! Yes sick of taking tablets, mine have just been upped for my blood pressure it's gone a little bit frantick the closer I get to my surgery. I had my pre-op this monday gone, passed that yeha! I'm getting a little nervous....But a month off work sounds like a rest to me. I will keep you"s informed.

[bmw_girl]

Hey Sue!

Send me an email. I didn't know when you were going in for surgery. I'm not doing too well at the moment.

PS - It's me Kathy

[angelrose]

hi.. ive just been told ive got conns sydrome and will need the lump (tumor) from my adernal gland removing.. been told op will be in next 8 weeks.. could anyone advice me how they got on and how they were after the operation. i understand the removal will be via keyhole.
rose

[Sue W]

Well hi all I have had my op and recovering. not that well very painfull, but it was well done to my doctors.
Yes I had keyhole too. I was told 8 weeks as well but had to wait 9 months. I do live in New Zealand and had it done by the public health system.
But all over now...
Kathy send me an email again my computer crashed and we had to buy a new one and all my stuff was lost and it took me ages to find this forum again.
Another photo would be great as well.
My scares are 3 small and one about 4" long as well. Bigger than I expected for keyhole but they are healing really well.
I am down to only 2 bp tablets now and my doctor hopes to drop them completly in a few weeks.
I had no external stiches they glued me up, its great, but I did have quite a few internal stiches, some of which have ripped causing extra pain now but getting better.laying in bed and turning over has down that very painfull.
They took out my left adrenal gland completly with the tumour.
If you would like to email me Anglerose you can on [e-mail]
good luck.

[bmw_girl]

Hello there Sue! It's so nice to hear you had the surgery. I was thinking about you all summer and was wondering how you were. I'll send you an email - so many strange health problems have been creeping up on me the past few months.
Speak soon

PS - any one else who wants to talk about these adrenal tumors are welcome to email me as well.
[e-mail]

[TX_Dave]

Hi folks,

After many years of Doctors and fighting high blood pressure, I finally have been diagnosed with Conn's Syndrome. The doctor said he sends people in for MRI all the time to check for Conn's but I was the first he had that was confirmed. He is a kidney specialist, does transplants of kidneys, but doesn't want to remove the single tumor I have on one of my adrenals.

Though my blood pressure immediately came under control (I actually went low!) he has said he wants me to just stay on Aldactone forever. I have read that surgery is the route for involvement of just a single adrenal.

Does anyone have any idea why the reluctance to operate? Any similar experiences or success stories.

There does not seem to be many experiences related on the internet, just a few technical descriptions which copy each other.

Thanks all!

[TX_Dave]

I have single adrenal conns but the doctor wants me to be on aldactone rather than have surgery. There does not seem to be many posted experiences on the internet, just technical descriptions which all copy each other.

Having my blood chemistry vary bt the hour for the rest does not thrill me. Has anybody heard reason not to have surgery? Aybody having good results with medicine or surgery?

Thanks!

[TX_Dave]

I have it. :(

[TX_Dave]

forgive the multiple posts.

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