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I am trying to seek advice on what options i may have that possibly is being missed by the consultants i have been under.
i am a NHS patient -
i have been investigated for over 5 years
i have resistant hypertension
MY bp sails around 190/120
I have been under cardiologist with various tests including a angiogram
i have been under a endocrinologist eith vsiius tests
my aldosterone is very high but suppresses to 138
my cholesterol is high
my testosterone is low
i am physically fit
dont drink alcohol
41 years of age
serving frontline police officer
a vast amount of medication trialed over 5 years and all failing -
direction was taken in the direction of a tumour but cant find it and wont put me forward fir renal veign sampling.
awaiting now to see if i will get funding to see a Dr LOBO IN London who might be able to assist with a procedure but not known at this stage.
No consultant or gp knows what medication to try now - i have now refused to guinea pig anymore as they dont work and fed up with the side effects - at one point i was in 13 tablets a day.
oedema is getting worst as is the light headedness
finally the consultant has told me i have to be precautious now in not taking the meds as i will have a heart attack or stroke - but if i am lucky enough not to my organs will fail within ten years - but they dint work and the dsily side effects im not willing to out up with anymore
i have a lovely family and want to be around longer than 10 years but no one knows what to do so thought i might put it out here to see if anyone has any ideas ?
0 likes, 28 replies
Hi , jamie sorry if I am not much help but are you on other meds besides bp meds, the reason i ask is that I was on other meds that sent my bp 130 /120 but did not notice till the meds got into my system months later ,wishing you well ,nez
thanks for the reply
i have been on meds for my heart namely nicorandil but this made no difference before during or after over the five years.
Are there not police doctors you could see or do you not want the force to know of your condition.
With your BP levels you are entitled to be referred to a 'Hypertension Referral Centre' where the experts are. They are are in the kidney units of major hospitals.
Just google the words. Unfortunately most only see patients one day a week. Your GP may not even have heard of them so it is better if you seek out the consultants name and consulting days.
thank you for taking the time to reply
we have occupational health thats all - i asked for help on going private but this was not given due to the long term costs. ironically if your a superintendant sat at a desk on about £65000 a year yoh get free private health care - all under that rank whi work 24/7 dealing with all the danger get nowt - i am under occ health but they are just to advise the force - this us another dabate fir another time.
at the moment i am waiting for funding for DR lobo in london who fits into your area of advice which as you state was located by my wife searching the experts and he seemed to be the man for the job
thank you again Derek
sorry about the typos - big thumbs dont do well on touchscreen phones
Dr Lobo does renal vein denervation that can reduce BP. Another is a device called a Rox Coupler that is like a paper clip inserted into your groin that diverts some blood away from your heart to reduce BP.
For Jamie it's a bit early to think about Renal Denervation until we see some biochemical analysis on his condition. RD is as you will already know a fairly recent development. At the clinical update trial there was evidence presented that with some patients it could be a short term fix.
With him mentioning aldosterone this goes hand in hand with resistant hypertension. Would like more details on lab results.
you sound like you understand this better than me - I am hoping i will get the funding fir DR LOBO and that when reviews all the tests and bio results he will give direction as i feel very deflated with the 4 consultants and Gp now not knowing what to do after five years.
my gp now states " i dred seeing you,i dred taking your bp, maybe we need to not put everyone in the same box maybe this is just you"
i like this idea but then maybe im just now in the - tick the to hard box
all the best
My first post is being moderated probably because I put a link in. I am a member of a Primary Aldosterone Yahoo Forum run by Dr Grim who is a hypertension specialist and has first rate knowledge of Primary Aldosteronism. Google it and join. There are lots of folk on there in a similar position to you. Pa was once considered rare, but especially in those with resistant hypertension, it can often be the cause. It is not easy to diagnose.
My Endo doesn't understand it and that runs true for many others. In fact an Australian doctor has just joined us because he is struggling like you. Let us know how you go on.
thanks paul i will do this.
Hi Jamie, I have been reading your post. I then started to look at Prof Lobo.
What part of the country are you in, I assume you can't be in London if you have to apply for funding. It seems that he works at Barts Blood Pressure Clinic, as well as privately. I appears that Barts see patients who are difficult to deal with.
In my experience, things move more effectively & speedily if you can get another Consultant to refer you, rather than a GP.
My very erratic blood pressure sent me to casualty twice last year, I was referred to a Cardiologist, for what that was worth & I now take 4 different drugs to control my resistant hypertension.
I will send you a pm shortly.
Good luck Jamie
'it' not 'I'!
One day we will be able to edit our blips!
What four meds do you take? This sounds like another example of cycling through BP meds to see which one, or which combination reduces your BP. Have you had a diagnosis as to why its up?
When I applied to get on his renal denervation trial in 2010 his PA said that all the places had been filled but she could get me on to his NHS list as he is very good with other hypertension treatments. As it would be an hour and half by train and then across London I wrongly turned it down.
Hello and thank you for taking the time to reply.
I have your PM - thanks - i have been in mist of those meds - i have been on alot .
i dont live in london so have had to ask fir funding
my comical story of getting a a consultant to refer me to lobo is as follows:
i was under swindon hospital in wiltshire under consultants in endicrine and cardiology due tichest pain and left arm pain in exertion.
angiogram did not reveal anything that required a stent they told me so started me on nicorandil and discharged me
condultant run tests located high aldosterone and low testosterone.
nit able to progress so tranferred me to the churchill hospital in oxford.
withdrew all meds and tested aldosterone which was still high - i think it was 470.
saline suppression test showed suppression of 138 - cut of point for the next procedure renal veign sampling is anything beloiw 140 they wont put you forward - i challenged this but they would not budge stating they believe its the blood pressure causing the high aldosterone not the other way around doing s complete u turn . pituarity scan was normal as was renal scan. discharged me back to gp. asked them to refer me to the next specialist - they refused stating only my go can do that or my swindon consultant - no doubt about where i live and whos pot if money it comes under!!!!
back again and the consultant appologised - left the room to seek advice - cone back and stated go back to go to try and trial mire meds - have not heard from them for over a year
SWINDON GP this month:
qoute " i dont know shat to do we have tried all the drugs i can think of, all the drugs directed by them and they dint work. i have asked them fir help and they send you back to me - maybe this is just t you and we should not put everyone in the same box"
wife looses it with gp .........
suggests DR LOBO upon google search and then speaking to his secretary. now awaiting fir response on funding!
i conclude with me telling the oxford and swindon specialists that i know longer will be a guinea pig as i gave s ling lust if failed drugs over 5 years with a variety of daily side effects.
i am told i will have a heart attack or strike but if i am lucky enough ti nit have one my organs will fail n the next ten years.
i am married with a two year old with no life insurance willing to now cover me - frustrating but there are many others worst of than me.
if you get chance let me know your thoughts in the below
Sadly your story is consistent with many others when aldosterone is high. Just been reading a paper because I am having a few heart issues related to aldosterone which at the moment I won't go into details as it's gone on for 42 years.
"Aldosterone injures tissues and is toxic to the heart. This toxicity, in fact, is seen in the myocardium, blood vessels, renal tissue, and cerebral tissue. Aldosterone promotes endothelial dysfunction, tissue fibrosis, and inflammation. Aldosterone blockade has a prominent future as a tissue protector".
I'm not saying your heart issues are deffo related to aldo but I am just flagging up a possible link.
Regarding Internet help, I can verify the background of our Forum Doctor Grim on Yahoo as he took my case study to the American Heart & Hypertension Scientific Sessions Conference in Chicago 6 Sept - 9 Sept. I flew out there and co-presented with him. Had the opportunity to talk to 4 leading researches who suggested some new strategies for me to try and they explained things to me that were not fully understood by many Endo's in the UK.
I hope you join our group. Good luck with everything - your not alone in this.
i am struggling to find it paul but will look again
can you pm me the details
The link is not going your way as its off to the Moderator. No idea how long that will take! Instead this will get you there.
Go to Yahoo's home page
Click on More . . .
Click on Groups
In top search bar type: Hyperaldosteronism
Join this discussion or start a new one?New discussion Reply