- Trouble getting offical diagnosis

[Guest guest]

,

Your story is too familiar to most of us. It seems

to me like Endos know a lot about diabetes and thyroid

problems and not much else. I'd suggest that if

you're near a university or large teaching hospital,

you see one of their hypertension specialists. The one

I saw and who finally diagnosed me seemed to be

infinitely more familiar with PA than the Endos I'd

seen.

Dr. Grim will correct me if I'm wrong but I don't

think you have to have an adrenal tumor to have PA,

you can have adrenal hyperplasia, causing the adrenals

produce too much aldosterone. I also had a large

weight gain over a 10 year period and have had

abnormally high cortisol and testosterone levels at

times, normal at other times. I have a definite

cushingoid appearance. I still feel crappy most of

the time but at least my BP is undercontrol now. Are

you on spiro?

a

--- juliegf65 <j_foster@...> wrote:

> I know I have Conn's - so do all of the specialists

> I have seen, but

> for some reason they are very careful with the

> wording they choose

> to use. They (nephrologist and endocrinologists) say

> 'it seems that

> you have Conn's), but they won't say 'you have

> Conn's'. I can only

> work part-time because of my health but I wonder how

> difficult it is

> going to be to have this documented.

> I am not sure where my results are at the moment but

> my

> aldosterone/renin ratio is very high. Without

> medication my blood

> pressure is at time around 190/120. I take inderal

> for this, though

> it tends to wear off by nighttime and each morning I

> wake up feeling

> like I have been hit by a train (I take 40 mg each

> morning).

>

> I had misdiagnosed migraines for 25 years. Because

> they

> were 'atypical' and had a vertigo component as I

> seem to have damage

> to my right ear, they were misdiagnosed as panic

> attacks,menieres

> and all types of things. None of the medication I

> was given for

> these attacks ever worked until I went on inderal

> and as well as

> lowering my blood pressure it lessened the severity

> and frequency of

> the migraines (Praise the Lord because they are

> dreadful migraines).

>

> Often I have bouts of gastric problems and vomiting.

> This actually

> happened last night. I was very ill and had eaten

> some corn ships

> and am wondering if this could be related to the

> Conn's and fluid

> imbalance.

>

> On a different note, I have had my adrenals scanned

> a few times and

> no tumour has presented itself. Its at this point

> that I am usually

> dismissed by specialists even though the

> aldosterone/renin ratio is

> high and I am symptomatic of Conn's.

> What else can cause Conn's - tumours in other area's

> ? Someone

> mentioned a genetic cause - what is that called as I

> don't recognise

> the abbreviation which was used.

>

> I look like I have cushings too. I have had one

> elevated 24 hour

> cortisol test which was dismissed because a

> subsequent 24 hour

> cortisol test was abnormally low - I have no idea

> what is going on

> there.

>

> Its so nice to have a community of other people who

> have to wrestle

> with this illness.

>

> I remember the first time a gp mentioned that I

> might have Conn's. I

> had quite a heated argument with him as I was

> telling him that there

> was something wrong with me and I sensed that my

> electrolytes were

> labile. He said I suppose you might have Conn's but

> didn't order any

> tests for it and I ended up changing gps.

>

> Eventually an endocrinologist tested

> aldosterone/renin as I

> explained to him that during routine surgery for a

> nasal polyp my

> blood pressure had been spiking.

>

> I now have a request for an acth stimulation test as

> my cortisol was

> measured when it was low. My last endo said my

> results don't make

> sense. I would have thought he would focus on the

> Conn's and work

> out where the problem was coming from but because

> there is no

> obvious tumour on the adrenal glands he is not

> willing to do venous

> sampling as it is invasive. I respect his reasoning

> but it is not

> helping me.

>

> I am also concerned as my weight has doubled in the

> past ten years.

> Can Conn's cause this type of swelling and weight

> gain? I think

> something is secreting cortisol as well as my body

> just used to

> regulate itself until the last ten years when I have

> become really

> unwell.

>

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