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Hypertension help and advice sought

Posted , 6 users are following.

jamie270477
jamie270477

Hello,

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

eat clean

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

28 Replies

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  • mike92384
    mike92384 jamie270477

    Posted

    jamie270477...you certainly are having quite the time of it, aren't you. There isn't anything more frustrating than going from Dr. to Dr. & all of them 'scratching their heads"., & saying, "I don't know why"., but they don't actually say the words. IDIOPATHIC is always used when Drs can't find an explanation, but they never admit it. I do wonder about your cholesterol. Have you done anything about this? Also, I note you are a police officer. I don't have to tell you about the anxiety that's attached to such a profession. I'm a retired police officer myself.

    As one other person wrote..perhaps the culprit could be one of the medications you're already taking. You're also dealing with edema...what has your cardiologist said about that??

    You made mention of a tumour....do you have one & they can't find it, or do they SUSPECT you have a tumour? This too can raise bp. There are so many things that go on in the body that certainly can be the cause of elevated bp. What sort of bloodtests have been run to try to confirm whether or not you have a tumour? There are certain blood markers they look for in bloodwork. Certainly the elevated aldosterone can raise bp. I have just read over your threat once again, & see that you have been through the wringer with all of this. One can hardly blame you for feeling the way you do.

    I am not at all impressed with today's doctors. They don't always follow through as they should.

    If I may suggest...get back to your GP. Express your opinions/concerns once again. Don't say you'd like an appointment to see a Cardiologist again say you WANT one. Also INSIST investigation takes place into whether or not you have a tumour. If one is suspected, investigation should take place, to confirm or rule it out. The anxiety of not knowing one way or the other certainly causes anxiety. High anxiety=elevated bp.

    Please let us know how you get on. Stay positive...stay strong.

    • jamie270477
      jamie270477 mike92384

      Posted

      Cheers for reply MIKE

      hope your doing ok in retirement.

      the tumour is linked to what they were looking at in conns syndrome told me - however as per my lengthy update below - sorry for this :

      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.

      SWINDON CARDIOLOGIST:

      angiogram did not reveal anything that required a stent they told me so started me on nicorandil and discharged me

      SWINDON ENDOCRINOLOGIST:

      condultant run tests located high aldosterone and low testosterone.

      nit able to progress so tranferred me to the churchill hospital in oxford.

      OXFORD ENDOCRINOLOGIST

      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!!!!

      SWINDON CARDIOLOGY

      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.

      Shame im not a super on £65000 plus - i would then have private health care as im sure you are aware - oh dear oh dear - just not right but there you go

      im a ten year frontline cop and had this before i joined but only started to do something bout it 5 years ago as my health started to decline and my wife took control .

      occ health have suggested i come of shifts now but to me thats admitting defeat - they have allowed me to remain but i had to sign a disclaimer.

      cheers

      jamie

  • derek76
    derek76 jamie270477

    Posted

    Is Diltiazem one of your medications as that is one that can cause oedema and light headedness .

  • mike92384
    mike92384 jamie270477

    Posted

    jamie270477....I'm sending you a link that comes from the Mayo Clinic. My GP says that anyone reading things on the internet should be very careful about where they read the information. One never knows if the person who posted the information is qualified, & one also wouldn't know how up-to-date that information is. He also said that reliable information

    soures are the Mayo Clinic & The New England Journal of Medicine.

    You mentioned a tumour...sometimes a tumour that's on the ADRENAL glands causes aldosterone to rise, which in turn raises blood pressure. Hopefully, I'm not repeating myself,

    or what you've written. Here's the link:.....

    https://www.mayoclinic.org/diseases-conditions/primary-aldosteronism/symptoms-causes/syc-20351803

    Pleaes let me know your thoughts. Don't give up on this. Insist on having things done.

    Cheers, Mate!!!

  • mrsmop
    mrsmop jamie270477

    Posted

    Jaimie, I'll put my thinking cap on. There must be a way of getting you referred to Barts Blood Pressure clinic, where Dr Lobo works

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