Getting a Diagnosis

[Guest guest]

>

> I am overwhelmed with all the information both here and elsewhere -

how do I actually get a

> diagnosis so that I know I am on the right track? I have felt

unwell for a long time with many

> floating symptoms that match many of the candida symptoms but they

also possibly match

> other conditions as there seems to be a lot of overlap. If anyone

can guide me in the right

> direction I would appreciate it - i've been to drs, counsellors,

psychologists, psychiatrists,

> natural practitioners & many other health practitioners/therapists

along the path of finding

> wellness. Does anyone know of any doctors or health practitioners

in Sydney that specialise

> in diagnosing & treating this condition? Thank you.

==>Hi there. Welcome to our group. What is your name? Like

said you don't really need a diagnosis. No matter what your

specific health problem IS this program will improve your health

because it provides all of the nutrients the body needs in order to

heal itself naturally. However you can take Dr. Crook's

Questionnaire which is in the article emailed to you when you

joined. No medical tests are accurate or conclusive for candida

overgrowth for reasons explained in my articles.

Candida causes many health problems for sure; it is at the root of

autoimmune diseases and many other diseases and malfunction of

organs. When you realize candida is only intended to start

overgrowing the the body dies, in order to turn the body back into

dust you get the idea of how much damage it is capable of doing.

Candida makes all of the body's cell membranes rigid/stiff which

means many organs can't function properly and hormones, nutrients,

etc. aren't as able to get into cells where they are needed.

See the Group Files (left menu) the 2nd Folder for my extensive

Candida Article, and also print out " Curing Candida, How to Get

Started " . Other folders contain handy diet and shopping lists,

supplements lists, etc.

We are here to help you get healthy, like I have and many members of

this group have, so do post questions and concerns. If you want a

boost read the numerous Success Stories in our Group's Files.

The best in health, Bee

[Guest guest]

You may have been ill at the time and your thyroid might have been having a

problem when your doc told you that you were underactive. Or you may have

antibodies and your thyroid function may be changing over time.

The only way you can really know is to list your symptoms and ask for the

correct tests, namely, TPOab, TGab, TSHa, FT3 and FT4 you could also do with

Ferritin, B12, Folate, and Vit D and any I have forgotton that others might

remember .

There is a possiblity you could have autoimmune thyroid problems which are just

kicking off and you haven't been feeling too bad. Maybe not, but these tests

should throw some light on things for you.

lotsa luv

Dawnx

[Guest guest]

Hello Anne and welcome. I hope you get the information you are

seeking from us, but if not, please read everything in the files section of

this forum and the information in our web site www.tpa-uk.org.uk . First bit of advice I

would give, never, never, never accept that your blood results are

" normal " just because your GP tells you they are " normal " .

You need to get your thyroid function test results from your doctor together

with the reference range for each of the tests and post them to the forum. The

ranges are different throughout the country, depending on the 'kit' the

laboratories use. Also, the reference range for TSH is so wide you could be

hypothyroid but your GP would refuse to treat you because of this. Many people in

the UK are being denied a diagnosis because the British Thyroid Ass. state that

to reach a precise diagnosis of hypothyroidism ONLY blood test results should

be taken into account. Your blood test results (in fact, all your medical

notes) are yours. Your doctor cannot withhold them from you, so telephone your surgery

and ask for these to be copied and tell them you will collect them from their

reception on a particular day.

Check your symptoms (and signs) against those in our web site www.tpa-uk.org.uk

Luv - Sheila

My current doctor has done a number of test 1

of which came back as borderline and the others as normal but doesn't seem to

be willing to pursue it any further. I am currently having a 'down phase' at

the moment and feel that the symptoms are getting worse and more frequent what

can I do to get my doctors attention??

Anne

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10:51:00

[Guest guest]

*** One of my previous doctors told me if i had an underactive thyroidproblem I would have the symptoms all of the time.

Hello Anne, and welcome,

Your previous doctor got it wrong (mind you, it's possibly what he had been taught in med school)

When you have an underactive thyroid, it means your thyroid is still working to some degree and therefore you would NOT have all the symptoms all of the time. That happens later, when your thyroid gland is more than 75%-80% destroyed and unable to excrete even the minimum requirement of thyroxine. The total destruction of the thyroid gland can take many, many years.

Please ask your doctor for copies of ALL thyroid blood tests he has done - and to include norm ranges - and then post the actual figures (and norm ranges) on here. Without knowing which tests have been done and seeing the figures, commenting is difficult.

Best wishes,

[Guest guest]

I will definately be asking for new blood tests and results of all the tests

done so far. As for the symptoms the list goes on and on including miscarraiges,

loss of sensation in hands and feet, tiredness (although it could be the three

kids and the full time teaching) and depression to name just a few. I have been

reading the posts about pulse rates too and have noted that my at rest pulse

rate in 58bpm. Also last year when I was in hospital the nurse nearly sent in a

crash team because my blood pressure was so low - my husband who is a paramedic

said that if he had a patient in the back of the ambulance with a blood pressure

that low he would be s****** himself -can't for the life of me remember what it

was though. There is so much information it is difficult to know where to

start!!

have a direction to start plodding in now though - need to do something because

I can't keep on going like this.

My mum has been diagnosed with ME for the last 10 years, but the more I think

about it she had similar 'low periods' just like me and has had borderline

thyroid tests, could the ME be a misdiagnosis - her mum had an underactive

thyroid too???

Anne

>

>

> *** One of my previous doctors told me if i had an underactive thyroid

> problem I would have the symptoms all of the time. Hello Anne, and

> welcome, Your previous doctor got it wrong (mind you, it's possibly

> what he had been taught in med school) [:-s] When you have an

> underactive thyroid, it means your thyroid is still working to some

> degree and therefore you would NOT have all the symptoms all of the

> time. That happens later, when your thyroid gland is more than 75%-80%

> destroyed and unable to excrete even the minimum requirement of

> thyroxine. The total destruction of the thyroid gland can take many,

> many years. Please ask your doctor for copies of ALL thyroid blood

> tests he has done - and to include norm ranges - and then post the

> actual figures (and norm ranges) on here. Without knowing which tests

> have been done and seeing the figures, commenting is difficult. Best

> wishes,

>

[Guest guest]

Also last year when I was in hospital the nurse nearly sent in a

crash team because my blood pressure was so low/

The first thing I would be doing is checking the 'adrenal fatigue' section of

the files in this case. Low bp is a classic symptom of adrenal problems. The Dr

doesn't diagnose people with low cortisol until they are at deaths door with a

condition called s disease. Doing that is just like waiting till the

thyroid shuts down completely and not accepting any low function just 'perfect'

and 'next to none' well that is how they operate with adrenals and it is serious

if you need to support your adrenals you WILL have low thyroid function as well

because one hormone is required to help the other into the cells. People who

don't show low thyroid hormone in the blood can still have this problem at a

cellular level. The Drs operate under a misaprehension that if thyroid hormone

blood levels are fine then you are fine, they don't look any further, my endo

didn't look any further either, maybe for a goitre and cealiac but that was it,

I got a no diagnosis, so I had to ask for one and got CFS.

If your mum has this and low thyroid function she could definately be diagnosed

with ME too as thyroid disease runs in families.

Definately read the files section for adrenal fatigue and other problems

associated condtions.

lotsa luv

Dawnx

[Guest guest]

Hi Anne - the best place to start is with our web site www.tpa-uk.or.guk

.. Click on Hypothyroidism and read everything there is there, especially all

the information in the drop down Menu, including the 'associated conditions'

that go along with being hypothyroid. Your BP and pulse being so low is because

you obviously have a very low metabolism, which is an indication you are

hypothyroid. Once you are started on treatment (the correct treatment) all your

symptoms should start to disappear. Have you asked for a referral to a thyroid

specialist, if not, you need to do this.

As for your Mum, many people who's thyroid function tests are

returned within the so called 'normal' reference range are then given a

'dustbin' diagnosis of CFS, ME or FM. These illnesses were only created after

blood tests were manufactured. Doctors find that treating these 'illnesses'

with T3 returns their patients to good health.

Luv - Sheila

My mum has been diagnosed with ME for the last 10 years, but the more I think

about it she had similar 'low periods' just like me and has had borderline

thyroid tests, could the ME be a misdiagnosis - her mum had an underactive

thyroid too???

Anne

>

>

> *** One of my previous doctors told me if i had an underactive thyroid

> problem I would have the symptoms all of the time. Hello Anne, and

> welcome, Your previous doctor got it wrong (mind you, it's possibly

> what he had been taught in med school) [:-s] When you have an

> underactive thyroid, it means your thyroid is still working to some

> degree and therefore you would NOT have all the symptoms all of the

> time. That happens later, when your thyroid gland is more than 75%-80%

> destroyed and unable to excrete even the minimum requirement of

> thyroxine. The total destruction of the thyroid gland can take many,

> many years. Please ask your doctor for copies of ALL thyroid blood

> tests he has done - and to include norm ranges - and then post the

> actual figures (and norm ranges) on here. Without knowing which tests

> have been done and seeing the figures, commenting is difficult. Best

> wishes,

>

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05:51:00

[Guest guest]

>>>>>As for your Mum, many people who's thyroid function tests are returned

within the so called 'normal' reference range are then given a 'dustbin'

diagnosis of CFS, ME or FM. These illnesses were only created after blood

tests were manufactured. Doctors find that treating these 'illnesses' with

T3 returns their patients to good health.<<<<<

Ive had M.E. for 36 years, if all that time it was my thyroid, shouldnt I be

dead?

Carole

[Guest guest]

Many, many folk have hypothyroidism for many years before their

thyroid function test results go outside of the reference range. Some never do,

and this is the worry. If doctors insist on believing a patient does not have a

thyroid problem when they complain of symptoms yet their blood results are

within the reference range, the poor patient will never be treated. This is why

they brought in these new diagnoses of CFS, ME and FM. They were never heard of

until after blood tests came in.

What are you being treated with now Carole. I need reminding.

Luv - Sheila

>>>>>As for your Mum, many

people who's thyroid function tests are returned

within the so called 'normal' reference range are then given a 'dustbin'

diagnosis of CFS, ME or FM. These illnesses were only created after blood

tests were manufactured. Doctors find that treating these 'illnesses' with

T3 returns their patients to good health.<<<<<

Ive had M.E. for 36 years, if all that time it was my thyroid, shouldnt I be

dead?

Carole

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17:56:00

[Guest guest]

<<What are you being treated with now Carole. I need reminding.<<

Hi Sheila,

I take levothyroxine only. was on 50mcg daily but went hyper according to a

blood test so she dropped it to 50 and 25 alternating, but that has led me back

into hypo, so i asled to see endo and she reluctantly agreed, its a 10 week wait

from getting gp request Im told, meanwhile Im back on 50 a day and expecting to

go hypo again before long.

Carole

>

> Many, many folk have hypothyroidism for many years before their thyroid

> function test results go outside of the reference range. Some never do, and

> this is the worry. If doctors insist on believing a patient does not have a

> thyroid problem when they complain of symptoms yet their blood results are

> within the reference range, the poor patient will never be treated. This is

> why they brought in these new diagnoses of CFS, ME and FM. They were never

> heard of until after blood tests came in.

>

>

>

> What are you being treated with now Carole. I need reminding.

>

>

>

> Luv - Sheila

>

[Guest guest]

Hi Carole - while you are waiting for your appointment with an

endocrinologist, please ask your GP if she will check your Ferritin level

9stored iron), B12, Vitamin D3, magnesium, zinc and copper levels). If any one

of these are low, it will be stopping your thyroxine from getting into the

tissues. Your endocrinologist will be glad of this information, so save

yourself some time and start the necessary supplementation if these show they

need it. Also, check out our adrenal and candida questionnaire in the files,

and see if they could be your problem. There is obviously something going on

that is stopping your thyroid hormone from working as it should.

Luv - Sheila

Hi Sheila,

I take levothyroxine only. was on 50mcg daily but went hyper according to a

blood test so she dropped it to 50 and 25 alternating, but that has led me back

into hypo, so i asled to see endo and she reluctantly agreed, its a 10 week

wait from getting gp request Im told, meanwhile Im back on 50 a day and

expecting to go hypo again before long.

[Guest guest]

Hi Sheila,

I asked for the blood tests and gave all the vit list, but am only getting blood

test for ferritin, b12 folate, and magnesium. Its being done friday, so see

what happens.

I will be trying out supplements once test is done,

Carole

>

> Hi Carole - while you are waiting for your appointment with an

> endocrinologist, please ask your GP if she will check your Ferritin level

> 9stored iron), B12, Vitamin D3, magnesium, zinc and copper levels). If any

> one of these are low, it will be stopping your thyroxine from getting into

> the tissues. Your endocrinologist will be glad of this information, so save

> yourself some time and start the necessary supplementation if these show

> they need it. Also, check out our adrenal and candida questionnaire in the

> files, and see if they could be your problem. There is obviously something

> going on that is stopping your thyroid hormone from working as it should.

>

>

>

> Luv - Sheila

>

>

[Guest guest]

You really need the Vitamin D3 tested too. This is so important

and there are a huge number of sufferers who have too low Vit.D3. I would contact

your GP and try to persuade him/her to do this test as a one off. Read the

information about Vit.D3 in our website and in our files.

Luv - Sheila

I asked for the blood tests and gave all the vit list, but am only getting

blood test for ferritin, b12 folate, and magnesium. Its being done friday, so

see what happens.

I will be trying out supplements once test is done,

[Guest guest]

> You really need the Vitamin D3 tested too.<

Hi Sheila

I asked for D3 but was told I could only get the ferritin, b12 folate, and

magnesium. Maybe Dr forgot! Will ask nurse to add it if she can. (have managed

to slip antibodies test in before that way)

Am taking supplememnts shortly anyhow, just ordered them

Carole

>

> You really need the Vitamin D3 tested too. This is so important and there

> are a huge number of sufferers who have too low Vit.D3. I would contact your

> GP and try to persuade him/her to do this test as a one off. Read the

> information about Vit.D3 in our website and in our files.

>

>

>

> Luv - Sheila

>

>

>

> I asked for the blood tests and gave all the vit list, but am only getting

> blood test for ferritin, b12 folate, and magnesium. Its being done friday,

> so see what happens.

>

[Guest guest]

I added my D to the request & the nurse "did" it, but the test result did not come back so it was stopped at the lab.

Val

I asked for D3 but was told I could only get the ferritin, b12 folate, and magnesium. Maybe Dr forgot! Will ask nurse to add it if she can.

[Guest guest]

You see Val - it is more important that each hospital saves as

much money as it can, never mind the patient. Once, patients were number one

priority, now money has taken its place.

Luv - Sheila

I added my D to

the request & the nurse " did " it, but the test result did not

come back so it was stopped at the lab.

Val

[Guest guest]

Hi Sheila,

Yesterday I repeated my thyroid blood test, so they now have a duplicated cost because of their stupidity - assuming that they do repeat the ones they did before. thought that the FT4 was suspicious so wanted it done again with the FT3. I had a letter yesterday from my endo (copy to GP) asking me to try to reduce my thyroid. I have a doctors appointment this afternoon (woke up with severe pain in right side waist & above, and moving is difficult) but I will not mention thyroid if he does not - different GP, so hopefully he will not.

Val

You see Val - it is more important that each hospital saves as much money asit can, never mind the patient.

[Guest guest]

Hi Val - hope you feel better soon and the pain disappears.

However, this sounds to be in your gall bladder area. Mention this to your GP. Have

you had this pain before?

I still doubt they will test your Free T3 unless you live in an

area where this is done - as it is done in my area.

Luv - Sheila

Yesterday

I repeated my thyroid blood test, so they now have a duplicated cost because of

their stupidity - assuming that they do repeat the ones they did

before. thought that the FT4 was suspicious so wanted it done again

with the FT3. I had a letter yesterday from my endo (copy to GP) asking

me to try to reduce my thyroid. I have a doctors appointment this

afternoon (woke up with severe pain in right side waist & above, and moving

is difficult) but I will not mention thyroid if he does not - different GP, so

hopefully he will not.

Val

[Guest guest]

An excellent synopsis Sue.  This is a chronic condition and

something that we have to learn to live with – appreciating the good days and just

getting through the bad. A diagnosis (whilst extremely important) is something

to simply confirm that we have a medical condition – if it’s inoperable (as

with mine being bilateral hyperplasia) then it’s largely up to us to decide how

we are going to live with that medical condition.

Best wishes to all.

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of marysue hopper

Sent: Monday, 14 December 2009 5:00 AM

hyperaldosteronism

Subject: Getting a diagnosis

I've been

reading posts by frustrated patients hoping doctors will listen and eventually

provide a real diagnosis for what's wrong. I understand that, as I lived

and hoped that once Conn's was diagnosed that the doctor would simply fix it -

but ... that wasn't the case.

Prepare

yourself for the diagnosis and treatment. My sort of summary:

When

my blood pressure dropped I felt lethargic, and my muscles and joints

began to ache daily

The

pain grew so intense I had trouble walking, and sleeping

The

lethargy continued and weight gain followed

Started

to get depressed

I

found this forum and started dashing

Symptoms

still there but manageable.

Pain

still there - and as previous to diagnosis I felt little pain - ever, no

numbing at the dentist for example, this is a niggler which can get me

down.

I

am walking again 5-10 km per day, regularly

Hope

is sneaking into my thought process - hope that all the symptoms disappear

From reading

others responses, it really doesn't sound as though the symptoms ever go once

you're on the right treatment. Even those who are extremely disciplined

with dash seem to struggle every now and then.

I guess the

point is - don't rush ahead thinking it will all be fixed once you receive your

diagnosis. That's just the beginning of a

Conn's Syndrome Sufferer's journey I believe. Others may feel

differently but I haven't seen it in the group posts.

Sue

Reading this email at work? Make

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[Guest guest]

What they need to do is to ask their Drs. to consult here for guidance. That is what we are here for. Always take them my article and invite them to join our group. It is always a combo of MCRBs and DASHings that ameliorates or abrogates the Sx. The choice is yours and your health care teams. Clarence Grimlowerbp2@...Seasons Greetings and On Dec 13, 2009, at 12:00 PM, marysue hopper wrote:I've been reading posts by frustrated patients hoping doctors will listen and eventually provide a real diagnosis for what's wrong. I understand that, as I lived and hoped that once Conn's was diagnosed that the doctor would simply fix it - but ... that wasn't the case.Prepare yourself for the diagnosis and treatment. My sort of summary:When my blood pressure dropped I felt lethargic, and my muscles and joints began to ache dailyThe pain grew so intense I had trouble walking, and sleepingThe lethargy continued and weight gain followedStarted to get depressedI found this forum and started dashing Symptoms still there but manageable.Pain still there - and as previous to diagnosis I felt little pain - ever, no numbing at the dentist for example, this is a niggler which can get me down.I am walking again 5-10 km per day, regularlyHope is sneaking into my thought process - hope that all the symptoms disappearFrom reading others responses, it really doesn't sound as though the symptoms ever go once you're on the right treatment. Even those who are extremely disciplined with dash seem to struggle every now and then.I guess the point is - don't rush ahead thinking it will all be fixed once you receive your diagnosis. That's just the beginning of a Conn's Syndrome Sufferer's journey I believe. Others may feel differently but I haven't seen it in the group posts. SueReading this email at work? Make a change with Xtra Jobs

[Guest guest]

Yes the issue is finding a Dr who knows what they are dealing with. That is me. But it seems to be difficult to get this concept across. May your salt intake and pressure be low!Clarence Grim BS, MS, MDClinical Professor of MedicineMedical College of WisconsinBoard Certified Hypertension SpecialistSpecializing in Difficult to control high blood pressure especially the numerous forms of Primary Aldsoteronism.Training you and your health care team to get to goal.ALL advice given by me MUST be discussed with your heath care team. They know you best. Don't gamble with your life. Don't become a cyberchondriac by looking at fringe groups. We encourage members of your health care team to join our efforts to learn what new and old in the BP business. On Dec 13, 2009, at 1:45 PM, megra0409 wrote:An excellent synopsis Sue. This is a chronic condition and something that we have to learn to live with – appreciating the good days and just getting through the bad. A diagnosis (whilst extremely important) is something to simply confirm that we have a medical condition – if it’s inoperable (as with mine being bilateral hyperplasia) then it’s largely up to us to decide how we are going to live with that medical condition.Best wishes to all. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of marysue hopperSent: Monday, 14 December 2009 5:00 AMhyperaldosteronism Subject: Getting a diagnosis I've been reading posts by frustrated patients hoping doctors will listen and eventually provide a real diagnosis for what's wrong. I understand that, as I lived and hoped that once Conn's was diagnosed that the doctor would simply fix it - but ... that wasn't the case. Prepare yourself for the diagnosis and treatment. My sort of summary: When my blood pressure dropped I felt lethargic, and my muscles and joints began to ache dailyThe pain grew so intense I had trouble walking, and sleepingThe lethargy continued and weight gain followedStarted to get depressedI found this forum and started dashing Symptoms still there but manageable.Pain still there - and as previous to diagnosis I felt little pain - ever, no numbing at the dentist for example, this is a niggler which can get me down.I am walking again 5-10 km per day, regularlyHope is sneaking into my thought process - hope that all the symptoms disappearFrom reading others responses, it really doesn't sound as though the symptoms ever go once you're on the right treatment. Even those who are extremely disciplined with dash seem to struggle every now and then. I guess the point is - don't rush ahead thinking it will all be fixed once you receive your diagnosis. That's just the beginning of a Conn's Syndrome Sufferer's journey I believe. Others may feel differently but I haven't seen it in the group posts. Sue Reading this email at work? Make a change with Xtra Jobs

[Guest guest]

Don't know if this would work and now sure just the beat way to do it.

We could write letters to all medical centers.

>

> >

> > An excellent synopsis Sue. This is a chronic condition and

> > something that we have to learn to live with – appreciating the good

> > days and just getting through the bad. A diagnosis (whilst extremely

> > important) is something to simply confirm that we have a medical

> > condition – if it's inoperable (as with mine being bilateral

> > hyperplasia) then it's largely up to us to decide how we are going

> > to live with that medical condition.

> >

> > Best wishes to all.

> >

> >

> >

> > From: hyperaldosteronism

[mailto:hyperaldosteronism

> > ] On Behalf Of marysue hopper

> > Sent: Monday, 14 December 2009 5:00 AM

> > hyperaldosteronism

> > Subject: Getting a diagnosis

> >

> >

> >

> >

> >

> > I've been reading posts by frustrated patients hoping doctors will

> > listen and eventually provide a real diagnosis for what's wrong. I

> > understand that, as I lived and hoped that once Conn's was diagnosed

> > that the doctor would simply fix it - but ... that wasn't the case.

> >

> >

> >

> > Prepare yourself for the diagnosis and treatment. My sort of summary:

> >

> >

> >

> > When my blood pressure dropped I felt lethargic, and my muscles and

> > joints began to ache daily

> > The pain grew so intense I had trouble walking, and sleeping

> > The lethargy continued and weight gain followed

> > Started to get depressed

> > I found this forum and started dashing

> > Symptoms still there but manageable.

> > Pain still there - and as previous to diagnosis I felt little pain -

> > ever, no numbing at the dentist for example, this is a niggler which

> > can get me down.

> > I am walking again 5-10 km per day, regularly

> > Hope is sneaking into my thought process - hope that all the

> > symptoms disappear

> > From reading others responses, it really doesn't sound as though the

> > symptoms ever go once you're on the right treatment. Even those who

> > are extremely disciplined with dash seem to struggle every now and

> > then.

> >

> >

> >

> > I guess the point is - don't rush ahead thinking it will all be

> > fixed once you receive your diagnosis. That's just the beginning of

> > a Conn's Syndrome Sufferer's journey I believe. Others may feel

> > differently but I haven't seen it in the group posts.

> >

> >

> >

> > Sue

> >

> >

> >

> >

> >

> >

> > Reading this email at work? Make a change with Xtra Jobs

> >

> >

> >

> >

>

[Guest guest]

You are so right, Sue. The really difficult part of this journey is

a) accepting that one has a chronic condition

finding there is no quick fix

c) learning how best to live with the condition through a process of

trial and error

I am gradually learning how better to self- manage this condition. I

increase my dosage of spiro when I feel I need to. I'm currently taking

75mg as opposed to dr's recommended 25mg. In hot weather my condition

worsens, and I find a higher dose helps. (Dr sceptical about this, but I

know it to be true for me.) I take magnesium supplements to help with

cramping and high dose paracetamol for pain relief (aching back and

legs). My diet is mainly fresh, raw food - minimal salt, minimal

processed food. I still have aching joints and muscles, fatigue etc, but

have blessed relief from the brain fog(for now) which makes life

miserable for me.

Sue, I don't understand what you mean by this - " Pain still there -

and as previous to diagnosis I felt little pain - ever, no numbing at

the dentist for example, this is a niggler which can get me down "

Carol

marysue hopper wrote:

>

>

> I've been reading posts by frustrated patients hoping doctors will

> listen and eventually provide a real diagnosis for what's wrong. I

> understand that, as I lived and hoped that once Conn's was diagnosed

> that the doctor would simply fix it - but ... that wasn't the case.

>

> Prepare yourself for the diagnosis and treatment. My sort of summary:

>

> * When my blood pressure dropped I felt lethargic, and my muscles

> and joints began to ache daily

> * The pain grew so intense I had trouble walking, and sleeping

> * The lethargy continued and weight gain followed

> * Started to get depressed

> * I found this forum and started dashing

> * Symptoms still there but manageable.

> * Pain still there - and as previous to diagnosis I felt little

> pain - ever, no numbing at the dentist for example, this is a

> niggler which can get me down.

> * I am walking again 5-10 km per day, regularly

> * Hope is sneaking into my thought process - hope that all the

> symptoms disappear

>

> From reading others responses, it really doesn't sound as though the

> symptoms ever go once you're on the right treatment. Even those who

> are extremely disciplined with dash seem to struggle every now and then.

>

> I guess the point is - don't rush ahead thinking it will all be fixed

> once you receive your diagnosis. That's just the beginning of a

> Conn's Syndrome Sufferer's journey I believe. Others may feel

> differently but I haven't seen it in the group posts.

>

> Sue

>

>

>

> Reading this email at work? Make a change with Xtra Jobs

> <http://au.rd./nz/mail/tagline/2009/jobs/*http://nz./r/018>

>

>

>

[Guest guest]

U need to have dr do 24 hr urine for Na K to be sure u are DASHING TO MAX Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Dec 13, 2009, at 6:50 PM, Carol Christie <carolch@...> wrote:

You are so right, Sue. The really difficult part of this journey is

a) accepting that one has a chronic condition

finding there is no quick fix

c) learning how best to live with the condition through a process of

trial and error

I am gradually learning how better to self- manage this condition. I

increase my dosage of spiro when I feel I need to. I'm currently taking

75mg as opposed to dr's recommended 25mg. In hot weather my condition

worsens, and I find a higher dose helps. (Dr sceptical about this, but I

know it to be true for me.) I take magnesium supplements to help with

cramping and high dose paracetamol for pain relief (aching back and

legs). My diet is mainly fresh, raw food - minimal salt, minimal

processed food. I still have aching joints and muscles, fatigue etc, but

have blessed relief from the brain fog(for now) which makes life

miserable for me.

Sue, I don't understand what you mean by this - "Pain still there -

and as previous to diagnosis I felt little pain - ever, no numbing at

the dentist for example, this is a niggler which can get me down"

Carol

marysue hopper wrote:

>

>

> I've been reading posts by frustrated patients hoping doctors will

> listen and eventually provide a real diagnosis for what's wrong. I

> understand that, as I lived and hoped that once Conn's was diagnosed

> that the doctor would simply fix it - but ... that wasn't the case.

>

> Prepare yourself for the diagnosis and treatment. My sort of summary:

>

> * When my blood pressure dropped I felt lethargic, and my muscles

> and joints began to ache daily

> * The pain grew so intense I had trouble walking, and sleeping

> * The lethargy continued and weight gain followed

> * Started to get depressed

> * I found this forum and started dashing

> * Symptoms still there but manageable.

> * Pain still there - and as previous to diagnosis I felt little

> pain - ever, no numbing at the dentist for example, this is a

> niggler which can get me down.

> * I am walking again 5-10 km per day, regularly

> * Hope is sneaking into my thought process - hope that all the

> symptoms disappear

>

> From reading others responses, it really doesn't sound as though the

> symptoms ever go once you're on the right treatment. Even those who

> are extremely disciplined with dash seem to struggle every now and then.

>

> I guess the point is - don't rush ahead thinking it will all be fixed

> once you receive your diagnosis. That's just the beginning of a

> Conn's Syndrome Sufferer's journey I believe. Others may feel

> differently but I haven't seen it in the group posts.

>

> Sue

>

>

>

> Reading this email at work? Make a change with Xtra Jobs

> <http://au.rd./nz/mail/tagline/2009/jobs/*http://nz./r/018>

>

>

>

[Guest guest]

CarolI had a huge tolerance to pain for the first 46 years of my life. Now, the haglund's deformity I gave myself by wearing high heals every day makes it nearly impossible to raise up on my toes without crying, that makes walking difficult. I experience muscle aches rarely, but also have arthritis (something I've known forever but again never experienced pain with.) Now though - it's a different story.I have shared the group and Dr. Grim's article; the Dash diet, etc. with my doctors - and no one knows if it was menopause that caused the change in my pain tolerance or Conn's. Incidently I'll be fifty in a few months, and have been dealing with the pain now for 4 years. I do not take pain meds (aspirin, paracetamol,

etc.) as I find they don't really help.My GP thought it might be due to the decrease in my testosterone levels - which were quite high for a woman. I think it's old age :-) Who said fifty is the new thirty --- they must be thirty! SueFrom: Carol Christie <carolch@...>hyperaldosteronism Sent: Mon, 14 December, 2009 3:50:35 PMSubject: Re: Getting a

diagnosis

You are so right, Sue. The really difficult part of this journey is

a) accepting that one has a chronic condition

finding there is no quick fix

c) learning how best to live with the condition through a process of

trial and error

I am gradually learning how better to self- manage this condition. I

increase my dosage of spiro when I feel I need to. I'm currently taking

75mg as opposed to dr's recommended 25mg. In hot weather my condition

worsens, and I find a higher dose helps. (Dr sceptical about this, but I

know it to be true for me.) I take magnesium supplements to help with

cramping and high dose paracetamol for pain relief (aching back and

legs). My diet is mainly fresh, raw food - minimal salt, minimal

processed food. I still have aching joints and muscles, fatigue etc, but

have blessed relief from the brain fog(for now) which makes life

miserable for me.

Sue, I don't understand what you mean by this - "Pain still there -

and as previous to diagnosis I felt little pain - ever, no numbing at

the dentist for example, this is a niggler which can get me down"

Carol

marysue hopper wrote:

>

>

> I've been reading posts by frustrated patients hoping doctors will

> listen and eventually provide a real diagnosis for what's wrong. I

> understand that, as I lived and hoped that once Conn's was diagnosed

> that the doctor would simply fix it - but ... that wasn't the case.

>

> Prepare yourself for the diagnosis and treatment. My sort of summary:

>

> * When my blood pressure dropped I felt lethargic, and my muscles

> and joints began to ache daily

> * The pain grew so intense I had trouble walking, and sleeping

> * The lethargy continued and weight gain followed

> * Started to get depressed

> * I found this forum and started dashing

> * Symptoms still there but manageable.

> * Pain still there - and as previous to diagnosis I felt little

> pain - ever, no numbing at the dentist for example, this is a

> niggler which can get me down.

> * I am walking again 5-10 km per day, regularly

> * Hope is sneaking into my thought process - hope that all the

> symptoms disappear

>

> From reading others responses, it really doesn't sound as though the

> symptoms ever go once you're on the right treatment. Even those who

> are extremely disciplined with dash seem to struggle every now and then.

>

> I guess the point is - don't rush ahead thinking it will all be fixed

> once you receive your diagnosis. That's just the beginning of a

> Conn's Syndrome Sufferer's journey I believe. Others may feel

> differently but I haven't seen it in the group posts.

>

> Sue

>

>

>

> Reading this email at work? Make a change with Xtra Jobs

> <http://au.rd. / nz/mail/tagline/ 2009/jobs/ *http://nz. / r/018>

>

>

>

Reading this email at work? Make a change with Xtra Jobs