whose story is this? helen's or wendy4ben. It is a classic and a shame but lets keep teaching Drs.

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In a message dated 9/26/06 3:26:27 AM, wendy4ben@... writes:

>hi helen .. it as tacken me 15 years to fined out i have conns

snydrome . were u from am from huddersfeild uk

>

> It is so nice to be able to talk to other very special people. I am just

> part way through the maze and at each twist and turn I often feel like

> giving up then look at my children and darling husband and know I can't

> leave them.

>

> My symptoms go back right to 1988 when my youngest child was born

(we have 3

> of our own and then acquired another teenager last year). There was

nothing

> you could go to your primary physician (GP here in the UK) with -

general

> tiredness, gaining weight, back pain, running to the toilet a lot,

thirst. I

> did go to a number of doctors in various places (at that time my

husband's

> job meant we were moved every couple of years) and did have some very

> general tests done for sugar diabetes (borderline negative) and iron

levels

> (higher than normal) and over the years have been told it is because

I had 3

> children under 5 and anyone would be tired, I had a hectic

lifestyle, it was

> my age, and the back pain was caused by osteoarthritis and of course

I had

> depression. My potassium levels were low and I was given potassium

salts and

> the second test showed they were better but still low. My Doc said

that was

> okay and to stop the salts but a third test would be a waste of

money. How I

> wish I had insisted! He also told me a lot of my problems were

because I was

> fat and gave me a diet to follow. I followed the diet and my rate of

weight

> gain increased. Prior to giving birth to my third child I was always

> slightly underweight for my height.

>

> My previous GP was a horror. If he couldn't fix it then he wasn't

interested

> and refused to refer anyone on to a specialist but at least he did

agree to

> check out my blood pressure which was 190/105 at that point. I knew

it was

> too high as I'd taken part in some research at work as part of a control

> group and had to be dropped from the programme because of persistently

> dangerously high blood pressure. My GP "monitored" my "raised" BP

every week

> for nearly a year but did nothing. Told me it was due to being obese and

> also my age was to blame and everyone got high blood pressure as

they got

> old (I am 43).

>

> Then I had a medical at work and they sent me straight from work to

my GP

> with a note asking him to instigate treatment and inform them of the

outcome

> but in the meantime I was too much of a risk at work and would not

be able

> to continue my employment. At that point I was given a beta-blocker

to which

> I was allergic (I woke up in the local hospital emergency room and

was told

> my BP was off the scale and to see my GP asap). I was then given

Istin (a

> calcium channel blocker) and I went into toxic shock. My own GP was on

> holiday when this happened and his locum saw me. The locum managed

to keep

> me alive and refereed me to an allergist at the big city hospital.

That was

> last Christmas (2001).

>

> When my own GP found out about the referral he was not pleased and

tried to

> cancel it. He also gave me a diuretic (not a potassium sparing type)

which I

> did not collect having checked it out with my best friend who is a

> pharmacist. I had a stand up fight with my GP and I don't know if he

did try

> to cancel the appointment but it was already in the system and I was

seen

> the following week.

>

> The allergist is wonderful. She is a very beautiful South African

Lady and

> very thorough. I think they took a whole arm full of blood and I had

a real

> good medical top to toe. My blood pressure was still very high and the

> potassium levels were down through the floor. They also found I had

severe

> allergy to most starches and can only eat rice, millet and tapioca

starch

> with confidence and maize starch if we are sure it is not

contaminated with

> gluten or potato. This does make life interesting when I need to eat!

>

> The allergist sent me to another part of the hospital for in-patient

> investigation of the blood pressure and lack of potassium (at that

stage the

> K level was 1.8 and normal is 4.5 to 5.5 I think) and my BP was so

high it

> could not be measured on a normal meter. They had to add numbers to the

> charts to record it. I have been in hospital for 3 of the last 4

weeks and

> have been wired for sound several times. I now hove no secrets! The

> endocrinologist is fabulous and talks to you not down to you or over

your

> head. At one point he said to me "You are a highly intelligent woman and

> this must have been very distressing for you. The mess of your body

> chemistry will have caused some brain damage and you will feel like your

> memory is Swiss cheese...... memory is Swiss cheese......<wbr>..."

really

> thought I had lost my marbles. He also wrote key points down and let

me look

> stuff up in his own reference library.

>

>

> They have eliminated Cushings Disease and Rhea but all along Simon (the

> Endo) said he thought it could well be Conn's Disease. The samples

have to

> go to a lab in Leeds where they will be evaluated and it takes 4 to

5 weeks

> to get results from the ELISA tests. As I have worked in the

biochemistry

> evaluation field I know more about the mechanics of these tests than the

> doctors and did a mini-workshop for anyone interested in the

hospital about

> how they worked and the pitfalls of both ELISA and rapid tests. I

was told

> this had been valuable to everyone and not just the medical students and

> have been asked to repeat it next time I am in. I'll take a kit in

with me

> then so they can see what I am talking about rather than have to

look at my

> poor drawings.

>

> It was found I do well on spironolactone but have to stick to one

particular

> brand as I do not have allergic reaction to it. My BP is down to

just above

> normal and my K levels are keeping up reasonably well. I have to eat

bananas

> and chocolate to keep them up there which is really difficult!

>

> Now we wait for the test results which are due in a couple of weeks.

I had a

> CT scan last week and hope that will show the trouble as well. Do I have

> tumours on one side or both? Is it operable? Will the tumours regrow

or grow

> on the other adrenal gland? Who knows.

>

> Sorry this is so long - it helps just to talk.

>

> Helen

>

I am not clear if this is Helen's story or 4ben??

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.