Previous Conns Syndrome need help with menopause and one adrenal gland!

Hi, the only tests I had for output of cortisol were the adrenal vein sampling and a 24 hour urine test done before the adrenalectomy. I have not had it tested since. I am post menopausal.

Hi, thanks for your answers. Could you send me a private message about the herbal remedy? Have you had an adrenal removed?

hi yes passed the test x

Pamela did you have a sub-total adrenalectomy of a full one?

Hi Conns, I had one adrenal gland removed 3 and half years ago. Can’t say having one adrenal doesn’t have it’s drawbacks but I’m very pleased to be rid of all that extra damaging aldosterone! Have you had an adrenalectomy?

Hi again Conns,  how interesting! I’m originally from the UK but have lived in Canada for 30 years. Believe it or not, the Canadian doctors/endocrinologists have little understanding of Conns as well! I started with hypertension when I was 38 and went undiagnosed with Conns for 15 years and it was only through my persistence that I got anywhere and eventually had a very good doctor. 

Do you still have hypertension? Are you on steroids? I always find it interesting to know other patients’ stories.

Hi Airiele,

The diagnosis was bilateral disease (adrenal hyperplasia). Following surgery hypertension came back and prescribed Spironolactone since 1978, and Enalapril since 1988. This form of Conn's goes hand in hand with resistant hypertension. I guess being discovered aged 24 at a routine medical at college with a BP of 245/125 meant that aldosterone was caught relatively early before it could do as much damage as other Conn's patients have experienced. I don't need steroids as the right gland has regenerated and now (since 2008 MRI scan) has a 1cm adenoma on it. Mutated cell clusters also continue to stir up aldosterone as when so BP can be well controlled for a while then it can rise to 140 / 150 to 80 / 85 which is manageable at least. The new hypertension guidelines for 2017 mean that normal BP is <120 and <80. More challenges put our way. With dealing with this for so long I like to share what I have learnt from experience. My Wisconsin doctor thinks I am longest surviving patient with Conn's. I'd rather do without that accolade, but if and when fellow Conn's patients get in contact with me, I hope I can show them that you can live a 'relatively' normal life if you play by the rules!

With all good wishes, Paul

PS Have a friend on Vancouver Island recently DX with Conns.

Hi Conns,

Yes you were very lucky to be diagnosed so early. Since my adrenalectomy my blood pressure is more easily controlled but unfortunately I became so paranoid about doctors blaming me for it when I had Conns syndrome that I now get white coat hypertension unless familiar with a doctor! I live in Vancouver. Does you friend have a good doctor over here? Was your doctor in the US Dr Grimm by any chance?

It is such a good thing that you are able to help others who would otherwise be struggling with horrible symptoms and doctors’ brush offs as I had to go through.

Best wishes

Airiele 

Hi Airiele,

Yes it is Dr Grim. A little surreal to be presenting as co-author with him at such as prestigous conference. When he told me what he wanted to do by taking my case study to conference I offered to hop on a plane and be there - a first to have the actual case study patient there as well. The AHA gave me a guest pass or the entire conference which was helpful. The fact I like jazz music and that it was being held in Chicago made it a very cool holiday as well.

It was interesting talking to friends of Dr Grim who in their own right are top of their respective trees in a medical sense. Met Joseph Izzo from Buffalo, John Howard-Pratt from Indiana, and Celsa Gomez Sanchez from Mississippi. Got good feedback from all of them. The guy from the UK who works on PA (Conn's among other related diseases, was a now sho when we were doing our thing. Consistent with you saying how hard it is a) to find a doctor who understands, and b) is willing to give you time of day.

Marianne lives in Victoria. If you want to give me your contact details e.g. email address, I'll message Marianne and tell her I have been talking to you and leave it to her if sh wishes to make contact. If you joined Dr Grim's forum on Yahoo you would be in contact with her!

There is is desire amongst the Hypertension medical professionals to encourage the use of home automated BP monitors which will get aroud 'white-coat syndrome'. Sunday morning at conference was dedicated to a series of presentations around home monitoring.

Tired now, bed time.

Hope this helps.

Cheers, Paul

Hi Paul, 

How amazing that Dr Grim is your doctor! I think with all the help you’re giving to his research and other people with the condition you deserve an accolade! My only “accolade” would be that my endocrinologist, who also teaches medical students here, uses my case as an example of unilateral Conns Syndrome due to the very high amount of aldosterone coming from my left adrenal gland compared to the right being normal 🙂.

I will send you a private message with my email address and Marianne can contact me if she wishes.

With best wishes,

Airiele

Hi again Paul,

I just wanted to ask you a couple questions. Have you found out that your adrenal adenoma is aldosterone producing?

What does the SS test involve? I’m wondering if I can ask my specialist next time I see her .... although if a doctor doesn’t think a test is necessary they won’t refer you for one over here.

Hi Airiele,

The local Endo team declined a PET scan for me to see if it was likley active. I was told I could go private at $2600 - think not! If it proves to be non-active, Chicago specialist Celso Gomez-Sanchez alluded to mutating cell clusters could be the naughty ones producing or should I say increasing the amount of aldo. By SS test do you mean 'Short Synacthen' to measure your cortisol levels? If so, no harm in having it done as it onolves two samples taken from you in hospital over a period of 30 minutes (or an hour - I can't remember now).

Cheers, Paul