Re: a bit of review of alisonjanerowe

[Guest guest]

I do not see your renin Aldo numbers so cannot comment there are many Aldo experts in UK. Where are you exactY. I know many of them. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I am going it add some of alisonjanerowe posting and some of the replys as something may have been missed.

Hi, I am so glad I've found this group!

My stats:

Name: Alison Jane Rowe

Sex: F

Location: Prestatyn, Wales, UK

Age: 27

Height: 162

Weight: 59kg

BMI: 23

Meds: none currently, have been on birth control between ages 18-25 but off them

now

Symptoms: suggestive of aldosteronism going back to age 14 - polyuria

,polydipsia, headaches,lower back pain, fatigue, hair loss etc but always

normotensive.I had M.E./post infection fatigue syndrome for 6 months last year

after a week long infection.

Tests: cleared for other endocine dysfunction: thyroid/diabetes/ovarian etc.

Aldosterone normal, Renin suppressed and ratio is consistently elevated EXCEPT

when on low sodium diet when renin comes back to normal and aldosterone goes

through the roof (last test was 1756 pmol (range 140-1200). Ironically this just

makes my symptoms of polyuria/polydipsia worse tho so I follow an ordinary

sodium diet now.

Na & K levels: always within normal range whatever eat although K levels are low

normal on a low carb diet(???)

Hypertension: Normotensive when laid/sat down however rises considerably when

standing along with an incrase in pulse rate up to -highest recorded 176/127 bp

and 180 pulse - within 10 minutes causing me to faint and have momentry

unconciousness - confirmed by tilt table test.

Blood volume: too low (hypovolemia) confirmed by water balance test in hospital

-over 24 hours I drank 5 ltrs and lost 7ltrs! same as

what is like at home confirming that I'm in a constant state of dehydration.

Cardiologist opinion: postural orthostatic tachycardia syndrome (POTS)

can't explain why have hyPERtension rather than hyPOtension when stand up tho or

explain A:R results.

Endocrinologist no.1 opinion: can't possibly be aldosteronism with normal Na and

K levels so you must have psychogenic polydipsia (mental illness where sufferers

drink water excessively) so see a psychiatrist!

Endocrinologist no.2 opnion: not POTS - must be GRA 'cause of positive dex test

- doesn't understand you can also get ACTH sensitive tumours that respond to dex

tho, not yet had referral for genetic test, doesn't understand why I do not have

'essential hypertension' despite having an elevated A:R ratio.

My opinion: I have done research myself and found articles that have linked

normotensive aldosteronism to excessive production of a hormone called

kallikrein which causes dehydration rather than hypertension but at the same

time this hormone has an inflammatory effect on the heart causing it to become

constricted by fibrosis which then causes a surge in activity once the patient

stands/exercises causing orthotatic hypertension and tachycardia. I.e. that

normotensive aldosteronism is NOT okay, can still mess your heart up and this

needs to be investigated by measuring kallikrein and having a cardiac MRI and

then

needs to be treated with high doses of spironolactone (which lowers

kallikrien along with aldosterone and has an anti-fibrosis effect) even if any

tumours have been removed.

The small hospital where I've been referred can't cope with this tho

as it's a new area of research and not in their textbooks. But at

the same time they refuse to refer me to a proper endo dept elsewhere because

they are excited about having found a new case of GRA - even tho the dex test is

notorious for false positives/negatives!

They want to start me on glucocorticoids without even determing whether

I have GRA properly or not! They even said I can't go on spironolactone because

that's only used for heart failure not for primary aldosteronism which is

obviously not true. They wont refer me on saying if I want to be seen by an

aldosterone expert I will have to find one myself and get them to agree to

seeing me!

So please give me your suggestions as to where in the UK I can find an

aldosterone expert who can cope with a different case than what appears in their

textbook.

Thank you,

Alison Jane Rowe

You appear to my reading of your story to have an early form of PA.

Read my evolution article and take to your team.

I would advise asking or a trial of spironolactone to see if it helps.

You say you are always normotensive but have hypertension when you stand. Supp????

CE Grim MD

Guess your endo has never heard of normokalmeic PA. It has only been know for about 45 years. When did he finish training?

How many times a night do you get up to pee?

Tell us if they have trouble drawing your blood?

Family Hx of HTN or low K or early strokes in males?

Ask Endo if renin is suppressed why is aldo not low?

Do you have a 24 hr urine for Na, K anywhere in your records.

Get DASH book and start now.

CE Grim MD

Hi,

Thanks CE Grim and others for replies.

I think I have a genetic form of PA - maybe normotensive GRA since symptoms go

back to age 13/14 and I am 27 now.

Endo no.1 has never heard of normokalemic PA, Endo no.2 has but neither of them

understand the difference between PA with esesential hypertension and PA with

orthostatic hypertension. Don't know when they finished their training but they

are both young and foreign and normally only work with diabetes patients.

Most nights I have get up twice to pee, sometimes once, sometimes 3 times.

They always have trouble drawing blood from me! Is this related? had no idea.

My grandmother (father's mother) had lots of symptoms I have and had HTN from a

young age that could not be controlled and she died from a pulmonary emobolism.

My father has similar symptoms to me but so far normotensive.

No family history of strokes - probably 'cause lots of them have/had diabetes

type II and have died from complications of that before stroke risk developed.

When on normal sodium diet my aldo is low and renin low and the ratio is high

when on normal sodium diet, on low sodium diet they both increase and the ratio

is normal - they almost misdiagnosed me with seondary aldosteronism because of

this.

My 24hr K levels are high normal to slightly elevated, they did not check 24hr

Na levels. My spot blood and urine electrolytes are always normal.

The DASH diet does not work for me (I have tried it) probably because it doesn't

lower orthostatic hypertension because this is a seperate problem (I think

caused by cardiac fibrosis) not directly as a consequence of salt/water balance

in body.

It DOES lower my overall blood pressure but because my resting/reclining/sitting

BP is normal anyway it just makes it go down to borderline hyPOtension which is

not good either. This could be explained by an excess of kallikrein according to

the latest research (as in my original post) so that is why I am looking for an

endo who is prepared to test me for this as well.

I will try contacting the endos suggested and push them for a genetic test and a

trial of spironolactone, if anybody else has any other ones they know of please

do let me know.

Thanks a lot

Alison Jane Rowe