Brick Wall

[Guest guest]

Hi Alison,

Here's something to be thankful for, I get the same kind of confusing, conflicting stuff from my doctors and I am paying these guys big $$ for it. So maybe the private doctors aren't any better? Of course everyone says Alaska doesn't have a good pick of doctor's but from what I hear about the ones my folks see in Oregon, I think they are all about the same, especially if they are all in the same age group. Just depends on what is being taught in the medical schools and how much they chose to study later too.

I decided I would just live without my smeller, I am not going through another surgery. The GP I see wants me to see an ENT, but I don't want to. The allergist I see says, don't bother they will want to do surgery and what you have WILL come back so it is a waste of money. I vote no ENT and besides I have to get the lung specialist, tests for allergies and the pulmonary function testing paid off before I can take on another doctor bill. I am not lucky enough to have insurance and of course all these people thing "just put it on the credit card".

It gets all too confusing for me, so I go eat popcorn. That seems to always make me feel better with a pure chocolate candy bar to finish it off. I never ate chocolate before I was on this diet restriction, never liked it, now its not too bad. What I really miss is the gummy worms and red licorice. Oh well those just flare up the TMJ anyway.

Since there is so much to deal with for this Samter's Triad, I have had to just learn to deal with one thing at a time. Each day it is a different thing though. Some days it is the asthma part, other days it is hard sticking to what I can eat, and then some days I just throw my hands up and suffer while eating everything in site. The whole picture is too overwhelming for me to deal with and maybe it is for you too. So try to take it one dat at a time for a while and see if that helps. Stressing over doctors and what they say is not a help, been there done that. Of course easy for me to say since my last appointment was May and am due for mid July appointments and will probably really confused, frustrated and mad when I get back from those appointments.

Hang in there Alison, most of us have been there. I miss smelling candles, they have such wonderful scents now days. And taste, I just eat the spiciest stuff I can find, or sweet or salty without eating peppers. Enough rattling on, just want you to know you are not alone in this stuff.

from Alaska

Brick Wall

Hello fellow sufferers!I have been reading all the latest messages with great interest. I posted a message a few weeks ago and now would like to report how I got on at my appointment last week with my ENT consultant.Brief history - Asthmatic since 20 (I'm now 45), developed anosmia via nasal polyps which were removed surgically about 3 months ago. I'm very aspirin/salicylate sensitive. Since surgery on polyps and attempt to clean out sinuses, my sense of smell/taste has not returned (it is 3 years now and I only get relief for a few days at the end of prednisone course).Anyway - my doc (in N Ireland)tells me that there is nothing else we can do except stay on Clarityn (antihistamine) and use Rhinocort nasal spray to slow down the regrowth of polyps! He expects me to need surgery again, but to fix the sinus problem, I would need more extensive (and dangerous!) surgery which he does not carry out, but he would refer me to discuss the risks. Great. So at that point, I took a very deep breath and said "you may think a little knowledge is a dangerous thing, but .." and then went on to ask him about aspirin desensitisation - he'd never heard of it. He thought that people could get all sorts of treatment if they were prepared to pay for it! anyway, he is going to contact a doctor/allergy specialist friend in London, to see if he knows of any such treatment. He felt that avoidance would be fairly easy - has he tried to eat a low salicylate diet!!!??? Next I asked about Singulair or another leukotriene inhibitor, but he said that was for asthma relief, so I'll ask my asthma doc about that when I see him in a few weeks, and will stress the possible benefits of it for my samters. I also asked about Kenalog or other long term steroid injection, but was put down on that one too - too many side effects, only gives 4 weeks relief, only for very special occasions etc..So at that point, I left, feeling very sheepish and went outside and cried! I'm to see him again in 6 months, no doubt to discuss the growth of my polyps! I had to wait 2 years for my first op, so maybe I should have asked him to put me on the waiting list now! I got the impresssion he thought I was interfering in something that I knew little about. As we have a National Health Service in the UK, you dont get to pick and choose consultants, being in a relatively small area, and with 3 teenagers to support, private medicine is out of the question.So, friends, any ideas/thoughts on self help? Do you all wash your noses out daily? I only did that for a couple of weeks after surgery. Might it help to begin again?I am feeling thoroughly depressed about the whole thing, and the realisation that I might never ever smell the roses that grow in my garden or the honeysuckle in bloom, and needless to say, cooking is a real chore - I just dont care anymore, but force myself to stop feeling sorry for myself and cook a big Sunday roast dinner for my family. And its raining again! at least Ireland earns its reputation for being green and lush!Thanks for all the info, support and encouragement.CheersAlps I'm going to try a glass of white wine today, to see if I wheeze!

[Guest guest]

Alison, from your post I would conclude that your ENT is not very knowledgable. Kenalog should provide well over a few weeks of relief (if it will work at all for you) at least a couple or three months. My last Kenalog injection was over 8 months ago and I still have my sense of smell and not much congestion. You might want to investigate the use of nasules to deliver topical steroids to your nose -- they are reputed to be much more effective than are sprays. Look at the bottom of the web page at http://personal.ecu.edu/wuenschk/prednis2.htm.

Yes, I and many others find it helpful to irrigate our noses every day. I do it every morning and every evening. Just be sure that you time the irrigation so that it does not wash out recently applied nasal steroid treatment.

Karl W.

[Guest guest]

A few words about your question on rinsing out your

nose. I just had my second surgery a month ago. This

surgeon is out of the University of Michigan Hospital

and specializes in sinus problems. Much more thorough

in the follow-up than the first ENT I went to. At my

last visit, I asked him for his suggestions to keep

the polyps from coming back. He said Nasonex (or

Flonase or Rinocort), and irrigation 3 times/day. He

is very strong on irrigation (water, salt & baking

soda). I asked him about Singulair which I've been on

10 mg since my first surgery, but he was very too

positive on it relative to preventing polyps. (I'll

be discussing increasing the dosage with my allergist

soon.)

Jim Mayo

--- alison_ormsby <ormsby@...> wrote:

> Hello fellow sufferers!

> I have been reading all the latest messages with

> great interest. I

> posted a message a few weeks ago and now would like

> to report how I

> got on at my appointment last week with my ENT

> consultant.

> Brief history - Asthmatic since 20 (I'm now 45),

> developed anosmia

> via nasal polyps which were removed surgically about

> 3 months ago.

> I'm very aspirin/salicylate sensitive. Since

> surgery on polyps and

> attempt to clean out sinuses, my sense of

> smell/taste has not

> returned (it is 3 years now and I only get relief

> for a few days at

> the end of prednisone course).

>

> Anyway - my doc (in N Ireland)tells me that there is

> nothing else we

> can do except stay on Clarityn (antihistamine) and

> use Rhinocort

> nasal spray to slow down the regrowth of polyps! He

> expects me to

> need surgery again, but to fix the sinus problem, I

> would need more

> extensive (and dangerous!) surgery which he does not

> carry out, but

> he would refer me to discuss the risks. Great.

>

> So at that point, I took a very deep breath and said

> " you may think a

> little knowledge is a dangerous thing, but .. " and

> then went on to

> ask him about aspirin desensitisation - he'd never

> heard of it. He

> thought that people could get all sorts of treatment

> if they were

> prepared to pay for it! anyway, he is going to

> contact a

> doctor/allergy specialist friend in London, to see

> if he knows of any

> such treatment. He felt that avoidance would be

> fairly easy - has he

> tried to eat a low salicylate diet!!!???

> Next I asked about Singulair or another leukotriene

> inhibitor, but he

> said that was for asthma relief, so I'll ask my

> asthma doc about that

> when I see him in a few weeks, and will stress the

> possible benefits

> of it for my samters.

> I also asked about Kenalog or other long term

> steroid injection, but

> was put down on that one too - too many side

> effects, only gives 4

> weeks relief, only for very special occasions etc..

> So at that point, I left, feeling very sheepish and

> went outside and

> cried! I'm to see him again in 6 months, no doubt

> to discuss the

> growth of my polyps! I had to wait 2 years for my

> first op, so maybe

> I should have asked him to put me on the waiting

> list now! I got the

> impresssion he thought I was interfering in

> something that I knew

> little about. As we have a National Health Service

> in the UK, you

> dont get to pick and choose consultants, being in a

> relatively small

> area, and with 3 teenagers to support, private

> medicine is out of the

> question.

> So, friends, any ideas/thoughts on self help? Do

> you all wash your

> noses out daily? I only did that for a couple of

> weeks after

> surgery. Might it help to begin again?

>

> I am feeling thoroughly depressed about the whole

> thing, and the

> realisation that I might never ever smell the roses

> that grow in my

> garden or the honeysuckle in bloom, and needless to

> say, cooking is a

> real chore - I just dont care anymore, but force

> myself to stop

> feeling sorry for myself and cook a big Sunday roast

> dinner for my

> family. And its raining again! at least Ireland

> earns its

> reputation for being green and lush!

>

> Thanks for all the info, support and encouragement.

>

> Cheers

>

> Al

>

> ps I'm going to try a glass of white wine today, to

> see if I wheeze!

>

>

__________________________________________________

[Guest guest]

Hi Alison (fellow UK sufferer !)

Don't give up hope.

I was diagnosed only recently with Samters (or ASA Triad as it seems

to be called over here), and this is the third ENT consultant I have

seen (because of moving around the country with my job) and I think I

have struck lucky this time, since the previous 2 seemed to be

defeated by my symptoms. The condition is not common (this

consultant tells me he has seen only around 8 patients in the last 4 -

5 years, and he gets sent the difficult sinus cases, so perhaps it

is partly forgivable that all doctors are not so aware. I've got so

down, on and off over the last few years with the nasal problems (3

ops in 5 years) but feel more hopeful now I know what the problem

is.

I've had asthma since the age of around 12 (37 now) and it was always

well controlled by salbutamol and beclomethasone until about 2 years

ago when I ended up in hospital for 2 days and in need of emergency

treatment on 2 other occasions (once after taking aspirin - although

I had often taken aspirin in the past with no problems). I was given

a salmeterol inhaler after this, but the asthma was still not really

controlled. About 6 months ago, after a review at the asthma clinic

at the GP, I was prescribed Seretide Accuhaler (Fluticasone - newer

steroid - and salmeterol), and since I started that I have not

wheezed once or used the salbutamol at all, and for the first time in

25 years I do not feel like an asthmatic. I work in the

Pharmaceutical industry, and we see that it is sometimes difficult to

convince the Regulators of the need for 'me too' drugs, but

individuals can respond differently to 2 drugs within the same class

of compounds - and I wonder if the beclomethasone was having any

effect at all in my case.

Asthma's pretty sorted, now polyps. I had my last surgery 2 years

ago, and since then have been using Flixonase Nasal Spray (good old

fluticasone again !) which seems to keep things at bay, although I

have had the odd course of prednisolone and antibiotic during the

winter. I had only 8 months between the 1st and 2nd ops, but was not

using any medication. When my current doc looked in my sinuses he

couldn't see any polyps thank goodness - I saw him a couple of months

ago when I was in a bad way and totally lost sense of taste/smell so

was convinced the polyps had grown back and I would need another op.

He couldn't see many anatomical landmarks (the first op was quite

radical and inferior turbinates were removed - so when you

mention 'extensive' surgery - watch out) Because of this, nasal

sprays just go straight down the back of the throat as there's not

much for the spray to stick to. Drops are more effective as they get

to the site of the problem and he gave me Flixonase Nasules, which

are single use drops (to be applied whilst upside down!), indicated

for nasal polyps, and are working well. I also wash my nose with

sterimar (sterile sea water spray) before applying drops. I will do

anything I can to keep my taste and smell as life is miserable

without it - that is what has got me down most of all. I won't give

up with this thing. I keep thinking it arose out of nowhere and

maybe it will disappear the same way - blind hope !

My consultant also mentioned diet (I haven't really pursued this as

it is SO restrictive, and seems to include all the healthy things I

like, but have tried to cut out strawberries and cherries) and

antileukatrienes - he reckons they work in about one third of people -

although I haven't used Accolate, at least I know it's another

weapon to deploy if needed. He mentioned also aspirin

desensitisation - there is research being done at King's College in

London (I think he said with Vitamin C?), so maybe your doctor will

find out about this (and the off-label use of Accolate/Singulair !)

from his friend. I am going to ask him more about desensitisation

when I see him in a couple of weeks.

I know I probably sound fairly positive at the moment but I've felt

very depressed, as you are now, over the last few years. It's

difficult for partners, friends and family to appreciate what we are

going through. I'm fortunate because the medication seems to be

working (just for now anyway), but from previous experience it's like

being on a knife edge and another battle with this is waiting just

around the corner - or maybe I should be more optimistic ! After all,

we are learning more and more about this all the time, so hang in

there and don't give up !

Esther.

PS It's been raining here too !

> Hello fellow sufferers!

> I have been reading all the latest messages with great interest. I

> posted a message a few weeks ago and now would like to report how

I

> got on at my appointment last week with my ENT consultant.

> Brief history - Asthmatic since 20 (I'm now 45), developed anosmia

> via nasal polyps which were removed surgically about 3 months ago.

> I'm very aspirin/salicylate sensitive. Since surgery on polyps and

> attempt to clean out sinuses, my sense of smell/taste has not

> returned (it is 3 years now and I only get relief for a few days

at

> the end of prednisone course).

>

> Anyway - my doc (in N Ireland)tells me that there is nothing else

we

> can do except stay on Clarityn (antihistamine) and use Rhinocort

> nasal spray to slow down the regrowth of polyps! He expects me to

> need surgery again, but to fix the sinus problem, I would need more

> extensive (and dangerous!) surgery which he does not carry out, but

> he would refer me to discuss the risks. Great.

>

> So at that point, I took a very deep breath and said " you may think

a

> little knowledge is a dangerous thing, but .. " and then went on to

> ask him about aspirin desensitisation - he'd never heard of it. He

> thought that people could get all sorts of treatment if they were

> prepared to pay for it! anyway, he is going to contact a

> doctor/allergy specialist friend in London, to see if he knows of

any

> such treatment. He felt that avoidance would be fairly easy - has

he

> tried to eat a low salicylate diet!!!???

> Next I asked about Singulair or another leukotriene inhibitor, but

he

> said that was for asthma relief, so I'll ask my asthma doc about

that

> when I see him in a few weeks, and will stress the possible

benefits

> of it for my samters.

> I also asked about Kenalog or other long term steroid injection,

but

> was put down on that one too - too many side effects, only gives 4

> weeks relief, only for very special occasions etc..

> So at that point, I left, feeling very sheepish and went outside

and

> cried! I'm to see him again in 6 months, no doubt to discuss the

> growth of my polyps! I had to wait 2 years for my first op, so

maybe

> I should have asked him to put me on the waiting list now! I got

the

> impresssion he thought I was interfering in something that I knew

> little about. As we have a National Health Service in the UK, you

> dont get to pick and choose consultants, being in a relatively

small

> area, and with 3 teenagers to support, private medicine is out of

the

> question.

> So, friends, any ideas/thoughts on self help? Do you all wash

your

> noses out daily? I only did that for a couple of weeks after

> surgery. Might it help to begin again?

>

> I am feeling thoroughly depressed about the whole thing, and the

> realisation that I might never ever smell the roses that grow in my

> garden or the honeysuckle in bloom, and needless to say, cooking is

a

> real chore - I just dont care anymore, but force myself to stop

> feeling sorry for myself and cook a big Sunday roast dinner for my

> family. And its raining again! at least Ireland earns its

> reputation for being green and lush!

>

> Thanks for all the info, support and encouragement.

>

> Cheers

>

> Al

>

> ps I'm going to try a glass of white wine today, to see if I

wheeze!

[Guest guest]

Hello fellow sufferers

Thanks to Karl, Jim and Esther for their repsonses to my depressed

email - your information and support is invaluable. I intend to

follow some of it up and am interested in the technique used to

irrigate the sinuses/nose - I've tried but not had much success, so

would be grateful for tips!

My nose is still quite clear, but the anosmia remains. I did have a

glass of white wine - californian I think, and I didn't get wheezy,

so that was wonderful. Still trying to avoid the high salicylate

foods, but am really tired all the time, which I think is also a

symptom.

Good luck everyone

Al

> > Hello fellow sufferers!

> > I have been reading all the latest messages with great interest.

I

> > posted a message a few weeks ago and now would like to report

how

> I

> > got on at my appointment last week with my ENT consultant.

> > Brief history - Asthmatic since 20 (I'm now 45), developed

anosmia

> > via nasal polyps which were removed surgically about 3 months

ago.

> > I'm very aspirin/salicylate sensitive. Since surgery on polyps

and

> > attempt to clean out sinuses, my sense of smell/taste has not

> > returned (it is 3 years now and I only get relief for a few days

> at

> > the end of prednisone course).

> >

> > Anyway - my doc (in N Ireland)tells me that there is nothing else

> we

> > can do except stay on Clarityn (antihistamine) and use Rhinocort

> > nasal spray to slow down the regrowth of polyps! He expects me

to

> > need surgery again, but to fix the sinus problem, I would need

more

> > extensive (and dangerous!) surgery which he does not carry out,

but

> > he would refer me to discuss the risks. Great.

> >

> > So at that point, I took a very deep breath and said " you may

think

> a

> > little knowledge is a dangerous thing, but .. " and then went on

to

> > ask him about aspirin desensitisation - he'd never heard of it.

He

> > thought that people could get all sorts of treatment if they were

> > prepared to pay for it! anyway, he is going to contact a

> > doctor/allergy specialist friend in London, to see if he knows of

> any

> > such treatment. He felt that avoidance would be fairly easy -

has

> he

> > tried to eat a low salicylate diet!!!???

> > Next I asked about Singulair or another leukotriene inhibitor,

but

> he

> > said that was for asthma relief, so I'll ask my asthma doc about

> that

> > when I see him in a few weeks, and will stress the possible

> benefits

> > of it for my samters.

> > I also asked about Kenalog or other long term steroid injection,

> but

> > was put down on that one too - too many side effects, only gives

4

> > weeks relief, only for very special occasions etc..

> > So at that point, I left, feeling very sheepish and went outside

> and

> > cried! I'm to see him again in 6 months, no doubt to discuss the

> > growth of my polyps! I had to wait 2 years for my first op, so

> maybe

> > I should have asked him to put me on the waiting list now! I got

> the

> > impresssion he thought I was interfering in something that I knew

> > little about. As we have a National Health Service in the UK,

you

> > dont get to pick and choose consultants, being in a relatively

> small

> > area, and with 3 teenagers to support, private medicine is out of

> the

> > question.

> > So, friends, any ideas/thoughts on self help? Do you all wash

> your

> > noses out daily? I only did that for a couple of weeks after

> > surgery. Might it help to begin again?

> >

> > I am feeling thoroughly depressed about the whole thing, and the

> > realisation that I might never ever smell the roses that grow in

my

> > garden or the honeysuckle in bloom, and needless to say, cooking

is

> a

> > real chore - I just dont care anymore, but force myself to stop

> > feeling sorry for myself and cook a big Sunday roast dinner for

my

> > family. And its raining again! at least Ireland earns its

> > reputation for being green and lush!

> >

> > Thanks for all the info, support and encouragement.

> >

> > Cheers

> >

> > Al

> >

> > ps I'm going to try a glass of white wine today, to see if I

> wheeze!

[Guest guest]

For the irrigatin, my Dr. gave me a " kit " from Neil

Med

(www.neilmed.com or www.nasalrinse.com). It is an 8

oz squeeze bottle with 50 packets of their saline

mixture you add to distilled water. My Dr. advised

that to make your own mixture, just add a 1/4 of

Kosher salt and 1/4 tsp of baking salt to water. You

don't have to use distilled water if you have good

city water. Heat in the microwave. Since I can use

tap water, I just use warm water.

You can buy this kit on line, and you can also just by

the bottle.

The bottle really works well. I bought an extra bottle

just to have, and had to trim the tube to get it to

work right.

Jim Mayo

--- alison_ormsby <ormsby@...> wrote:

> Hello fellow sufferers

>

> Thanks to Karl, Jim and Esther for their repsonses

> to my depressed

> email - your information and support is invaluable.

> I intend to

> follow some of it up and am interested in the

> technique used to

> irrigate the sinuses/nose - I've tried but not had

> much success, so

> would be grateful for tips!

>

> My nose is still quite clear, but the anosmia

> remains. I did have a

> glass of white wine - californian I think, and I

> didn't get wheezy,

> so that was wonderful. Still trying to avoid the

> high salicylate

> foods, but am really tired all the time, which I

> think is also a

> symptom.

>

> Good luck everyone

>

> Al

>

>

>

> > Hi Alison (fellow UK sufferer !)

> >

> > Don't give up hope.

> >

> > I was diagnosed only recently with Samters (or ASA

> Triad as it

> seems

> > to be called over here), and this is the third ENT

> consultant I

> have

> > seen (because of moving around the country with my

> job) and I think

> I

> > have struck lucky this time, since the previous 2

> seemed to be

> > defeated by my symptoms. The condition is not

> common (this

> > consultant tells me he has seen only around 8

> patients in the last

> 4 -

> > 5 years, and he gets sent the difficult sinus

> cases, so perhaps it

> > is partly forgivable that all doctors are not so

> aware. I've got

> so

> > down, on and off over the last few years with the

> nasal problems (3

> > ops in 5 years) but feel more hopeful now I know

> what the problem

> > is.

> >

> > I've had asthma since the age of around 12 (37

> now) and it was

> always

> > well controlled by salbutamol and beclomethasone

> until about 2

> years

> > ago when I ended up in hospital for 2 days and in

> need of emergency

> > treatment on 2 other occasions (once after taking

> aspirin -

> although

> > I had often taken aspirin in the past with no

> problems). I was

> given

> > a salmeterol inhaler after this, but the asthma

> was still not

> really

> > controlled. About 6 months ago, after a review at

> the asthma

> clinic

> > at the GP, I was prescribed Seretide Accuhaler

> (Fluticasone - newer

> > steroid - and salmeterol), and since I started

> that I have not

> > wheezed once or used the salbutamol at all, and

> for the first time

> in

> > 25 years I do not feel like an asthmatic. I work

> in the

> > Pharmaceutical industry, and we see that it is

> sometimes difficult

> to

> > convince the Regulators of the need for 'me too'

> drugs, but

> > individuals can respond differently to 2 drugs

> within the same

> class

> > of compounds - and I wonder if the beclomethasone

> was having any

> > effect at all in my case.

> >

> > Asthma's pretty sorted, now polyps. I had my last

> surgery 2 years

> > ago, and since then have been using Flixonase

> Nasal Spray (good old

> > fluticasone again !) which seems to keep things at

> bay, although I

> > have had the odd course of prednisolone and

> antibiotic during the

> > winter. I had only 8 months between the 1st and

> 2nd ops, but was

> not

> > using any medication. When my current doc

> looked in my sinuses

> he

> > couldn't see any polyps thank goodness - I saw him

> a couple of

> months

> > ago when I was in a bad way and totally lost sense

> of taste/smell

> so

> > was convinced the polyps had grown back and I

> would need another

> op.

> > He couldn't see many anatomical landmarks (the

> first op was quite

> > radical and inferior turbinates were removed - so

> when you

> > mention 'extensive' surgery - watch out) Because

> of this, nasal

> > sprays just go straight down the back of the

> throat as there's not

> > much for the spray to stick to. Drops are more

> effective as they

> get

> > to the site of the problem and he gave me

> Flixonase Nasules, which

> > are single use drops (to be applied whilst upside

> down!), indicated

> > for nasal polyps, and are working well. I also

> wash my nose with

> > sterimar (sterile sea water spray) before applying

> drops. I will

> do

> > anything I can to keep my taste and smell as life

> is miserable

> > without it - that is what has got me down most of

> all. I won't give

> > up with this thing. I keep thinking it arose out

> of nowhere and

> > maybe it will disappear the same way - blind hope

> !

> >

> > My consultant also mentioned diet (I haven't

> really pursued this as

> > it is SO restrictive, and seems to include all the

> healthy things I

> > like, but have tried to cut out strawberries and

> cherries) and

> > antileukatrienes - he reckons they work in about

> one third of

> people -

> > although I haven't used Accolate, at least I know

> it's another

> > weapon to deploy if needed. He mentioned also

> aspirin

> > desensitisation - there is research being done at

> King's College in

> > London (I think he said with Vitamin C?), so maybe

> your doctor will

> > find out about this (and the off-label use of

> Accolate/Singulair !)

> > from his friend. I am going to ask him more about

> desensitisation

> > when I see him in a couple of weeks.

> >

> > I know I probably sound fairly positive at the

> moment but I've felt

> > very depressed, as you are now, over the last few

> years. It's

> > difficult for partners, friends and family to

> appreciate what we

> are

> > going through. I'm fortunate because the

> medication seems to be

> > working (just for now anyway), but from previous

> experience it's

> like

> > being on a knife edge and another battle with this

> is waiting just

> > around the corner - or maybe I should be more

> optimistic ! After

> all,

> > we are learning more and more about this all the

> time, so hang in

> > there and don't give up !

> >

> > Esther.

> > PS It's been raining here too !

> >

> >

>

=== message truncated ===

__________________________________________________

[Guest guest]

You're describing what everyone here suffers from!!! It's awful.

We " feel your pain " .

Here in NYC good doctors are plentiful and it sounds like your doctor

is on the right track.

I believe that saline nasal spray (I use AYR, an " off the shelf "

product) helps to keep the mucous moist and the passages clean and it

is an inexpensive way to mitigate my nasal congestion. I use it

several times a day, depending on how I feel. It can't hurt and I

think it helps some.

Also, for asthma I use Singulair and Advair disks, both of which are

great.

I've just returned from my honeymoon to Italy where on two occasions

I passed ping pong ball sized gobs of yellow mucuous the consistency

of dried rubber cement out of my left nostril after soaking in a hot

bath for a LONG time. Very painful but if you can imagine the

relief!!!

I have a new ENT too - b/c of change in insurance - and he has me on

11 days of tapered steroids, entex la to soften the mucous and anti-

biotics. He treats others with this condition, which is good news. He

has never had a patient whose polyps went away as quickly as they

came, that's the bad news.

Good luck all!!!

> Hello fellow sufferers!

> I have been reading all the latest messages with great interest. I

> posted a message a few weeks ago and now would like to report how

I

> got on at my appointment last week with my ENT consultant.

> Brief history - Asthmatic since 20 (I'm now 45), developed anosmia

> via nasal polyps which were removed surgically about 3 months ago.

> I'm very aspirin/salicylate sensitive. Since surgery on polyps and

> attempt to clean out sinuses, my sense of smell/taste has not

> returned (it is 3 years now and I only get relief for a few days

at

> the end of prednisone course).

>

> Anyway - my doc (in N Ireland)tells me that there is nothing else

we

> can do except stay on Clarityn (antihistamine) and use Rhinocort

> nasal spray to slow down the regrowth of polyps! He expects me to

> need surgery again, but to fix the sinus problem, I would need more

> extensive (and dangerous!) surgery which he does not carry out, but

> he would refer me to discuss the risks. Great.

>

> So at that point, I took a very deep breath and said " you may think

a

> little knowledge is a dangerous thing, but .. " and then went on to

> ask him about aspirin desensitisation - he'd never heard of it. He

> thought that people could get all sorts of treatment if they were

> prepared to pay for it! anyway, he is going to contact a

> doctor/allergy specialist friend in London, to see if he knows of

any

> such treatment. He felt that avoidance would be fairly easy - has

he

> tried to eat a low salicylate diet!!!???

> Next I asked about Singulair or another leukotriene inhibitor, but

he

> said that was for asthma relief, so I'll ask my asthma doc about

that

> when I see him in a few weeks, and will stress the possible

benefits

> of it for my samters.

> I also asked about Kenalog or other long term steroid injection,

but

> was put down on that one too - too many side effects, only gives 4

> weeks relief, only for very special occasions etc..

> So at that point, I left, feeling very sheepish and went outside

and

> cried! I'm to see him again in 6 months, no doubt to discuss the

> growth of my polyps! I had to wait 2 years for my first op, so

maybe

> I should have asked him to put me on the waiting list now! I got

the

> impresssion he thought I was interfering in something that I knew

> little about. As we have a National Health Service in the UK, you

> dont get to pick and choose consultants, being in a relatively

small

> area, and with 3 teenagers to support, private medicine is out of

the

> question.

> So, friends, any ideas/thoughts on self help? Do you all wash

your

> noses out daily? I only did that for a couple of weeks after

> surgery. Might it help to begin again?

>

> I am feeling thoroughly depressed about the whole thing, and the

> realisation that I might never ever smell the roses that grow in my

> garden or the honeysuckle in bloom, and needless to say, cooking is

a

> real chore - I just dont care anymore, but force myself to stop

> feeling sorry for myself and cook a big Sunday roast dinner for my

> family. And its raining again! at least Ireland earns its

> reputation for being green and lush!

>

> Thanks for all the info, support and encouragement.

>

> Cheers

>

> Al

>

> ps I'm going to try a glass of white wine today, to see if I

wheeze!

[Guest guest]

Thanks for your help Avi - did your smell come back after losing the

ping pongs? sounds painful but wonderful! I'm going to try the

nasal irrigation again, beginning tomorrow. I saw my 'asthma'

consultant yesterday and he has at long last put me on Singulair from

today for a 3 month trial!! yes! (in addition to Clarityn, Rhynacort

spray and Seretide and Salbutamol as reqd. Oh, and Fluoxetine for

depression, which is beginning to help) He also told me to begin an

exercise programme again - I'd stopped as a result of getting too

wheezy in the gym or swimming, but I'll give it another go since I've

put on about 18 pounds. Why do I eat more when i cant taste? Comfort

eating I suppose.

Anyway, I asked this doc about aspirin desensitisation and he's going

to investigate, although he thought that it would not be effective

for the salicylates in food ... any body know if it is only for

artificially produced aspirin used in medication?

Good luck all of you going to La Jolla - hope it works out well.

Keep up the postings - I for one find them so encouraging and

inspiring, and life's too short to be down all the time.

Cheers

Ali

> > Hello fellow sufferers!

> > I have been reading all the latest messages with great interest.

I

> > posted a message a few weeks ago and now would like to report

how

> I

> > got on at my appointment last week with my ENT consultant.

> > Brief history - Asthmatic since 20 (I'm now 45), developed

anosmia

> > via nasal polyps which were removed surgically about 3 months

ago.

> > I'm very aspirin/salicylate sensitive. Since surgery on polyps

and

> > attempt to clean out sinuses, my sense of smell/taste has not

> > returned (it is 3 years now and I only get relief for a few days

> at

> > the end of prednisone course).

> >

> > Anyway - my doc (in N Ireland)tells me that there is nothing else

> we

> > can do except stay on Clarityn (antihistamine) and use Rhinocort

> > nasal spray to slow down the regrowth of polyps! He expects me

to

> > need surgery again, but to fix the sinus problem, I would need

more

> > extensive (and dangerous!) surgery which he does not carry out,

but

> > he would refer me to discuss the risks. Great.

> >

> > So at that point, I took a very deep breath and said " you may

think

> a

> > little knowledge is a dangerous thing, but .. " and then went on

to

> > ask him about aspirin desensitisation - he'd never heard of it.

He

> > thought that people could get all sorts of treatment if they were

> > prepared to pay for it! anyway, he is going to contact a

> > doctor/allergy specialist friend in London, to see if he knows of

> any

> > such treatment. He felt that avoidance would be fairly easy -

has

> he

> > tried to eat a low salicylate diet!!!???

> > Next I asked about Singulair or another leukotriene inhibitor,

but

> he

> > said that was for asthma relief, so I'll ask my asthma doc about

> that

> > when I see him in a few weeks, and will stress the possible

> benefits

> > of it for my samters.

> > I also asked about Kenalog or other long term steroid injection,

> but

> > was put down on that one too - too many side effects, only gives

4

> > weeks relief, only for very special occasions etc..

> > So at that point, I left, feeling very sheepish and went outside

> and

> > cried! I'm to see him again in 6 months, no doubt to discuss the

> > growth of my polyps! I had to wait 2 years for my first op, so

> maybe

> > I should have asked him to put me on the waiting list now! I got

> the

> > impresssion he thought I was interfering in something that I knew

> > little about. As we have a National Health Service in the UK,

you

> > dont get to pick and choose consultants, being in a relatively

> small

> > area, and with 3 teenagers to support, private medicine is out of

> the

> > question.

> > So, friends, any ideas/thoughts on self help? Do you all wash

> your

> > noses out daily? I only did that for a couple of weeks after

> > surgery. Might it help to begin again?

> >

> > I am feeling thoroughly depressed about the whole thing, and the

> > realisation that I might never ever smell the roses that grow in

my

> > garden or the honeysuckle in bloom, and needless to say, cooking

is

> a

> > real chore - I just dont care anymore, but force myself to stop

> > feeling sorry for myself and cook a big Sunday roast dinner for

my

> > family. And its raining again! at least Ireland earns its

> > reputation for being green and lush!

> >

> > Thanks for all the info, support and encouragement.

> >

> > Cheers

> >

> > Al

> >

> > ps I'm going to try a glass of white wine today, to see if I

> wheeze!

[Guest guest]

Ali -- What dose of Singulair are you going to go on? I just want to throw in

my two cents as always about this -- take at LEAST 20 milligrams a day.

If you want all the background information on why let me know, but it hasn't

been studied in people with as severe a disease as we have, only in people with

moderate asthma. So although ten milligrams a day works for most people, it

probably won't begin to tackle the problem for us.

I have research directly from the company who makes it on higher doses of

Singulair actually getting RID of nasal polyps completely.

I can't answer your question about the aspirin and salicylates because to be

honest I think the stuff about the salicylates is a load of crap. Dr. son

at Scripps in California always does these mini-challenges before the aspirin

desensitization where he gives them things like salicylates, tartrazine, etc,

and he never finds cross-reactions.

There are some things I react to but I don't really believe it's because they're

salicylates. For instance, wine, beer, alcohol, all have a fermentation process

and I am very sensitive to fungus ...

HTH

Lori

[Guest guest]

Hi Ali,

If you are trying to loose weight –

try weight watchers. I did it recently and am still working on it but it was

the most controlled, reasonable and controllable way I’ve found to loose

weight. When I was really good in sticking to the plan I lost up to 4 pounds a

week. Total I’ve lost 20+ pounds and I feel soooooooo much better. I

still want to loose more. But I do highly recommend it. More than anything I

learned that as much as I try to exercise, I needed to learn how to eat right

(right foods, right proportions, and in total right amount.)

Part of why I eat more when I can’t

taste is that I am never satisfied in a sensory perspective. We are sensory

deprived, literally and as a result try to compensate by physical satiation –

which is as satisfying. (That is the explanation from a very good psychiatrist.)

Then once I did start tasting – I gained about 20-25 pounds – thankfully

loosing it now. Hope this helps.

Good luck!

Meg

Re: Brick Wall

Thanks for your help Avi - did your smell come back

after losing the

ping pongs? sounds painful but

wonderful! I'm going to try the

nasal irrigation again, beginning tomorrow.

I saw my 'asthma'

consultant yesterday and he has at long last put

me on Singulair from

today for a 3 month trial!! yes! (in addition to

Clarityn, Rhynacort

spray and Seretide and Salbutamol as reqd.

Oh, and Fluoxetine for

depression, which is beginning to help) He also

told me to begin an

exercise programme again - I'd stopped as a result

of getting too

wheezy in the gym or swimming, but I'll give it

another go since I've

put on about 18 pounds. Why do I eat more

when i cant taste? Comfort

eating I suppose.

Anyway, I asked this doc about aspirin

desensitisation and he's going

to investigate, although he thought that it would

not be effective

for the salicylates in food ... any body know if

it is only for

artificially produced aspirin used in medication?

Good luck all of you going to La Jolla - hope it works out

well.

Keep up the postings - I for one find them so

encouraging and

inspiring, and life's too short to be down all the

time.

Cheers

Ali

> > Hello fellow sufferers!

> > I have been reading all the latest

messages with great interest.

I

> > posted a message a few weeks ago

and now would like to report

how

> I

> > got on at my appointment last week with

my ENT consultant.

> > Brief history - Asthmatic since 20 (I'm

now 45), developed

anosmia

> > via nasal polyps which were removed

surgically about 3 months

ago.

> > I'm very aspirin/salicylate

sensitive. Since surgery on polyps

and

> > attempt to clean out sinuses, my sense

of smell/taste has not

> > returned (it is 3 years now and I only

get relief for a few days

> at

> > the end of prednisone course).

> >

> > Anyway - my doc (in N Ireland)tells me that there

is nothing else

> we

> > can do except stay on Clarityn

(antihistamine) and use Rhinocort

> > nasal spray to slow down the regrowth of

polyps! He expects me

to

> > need surgery again, but to fix the sinus

problem, I would need

more

> > extensive (and dangerous!) surgery which

he does not carry out,

but

> > he would refer me to discuss the

risks. Great.

> >

> > So at that point, I took a very deep

breath and said " you may

think

> a

> > little knowledge is a dangerous thing,

but .. " and then went on

to

> > ask him about aspirin desensitisation -

he'd never heard of it.

He

> > thought that people could get all sorts

of treatment if they were

> > prepared to pay for it! anyway, he

is going to contact a

> > doctor/allergy specialist friend in London, to see if he knows

of

> any

> > such treatment. He felt that

avoidance would be fairly easy -

has

> he

> > tried to eat a low salicylate

diet!!!???

> > Next I asked about Singulair or another

leukotriene inhibitor,

but

> he

> > said that was for asthma relief, so I'll

ask my asthma doc about

> that

> > when I see him in a few weeks, and will

stress the possible

> benefits

> > of it for my samters.

> > I also asked about Kenalog or other long

term steroid injection,

> but

> > was put down on that one too - too many

side effects, only gives

4

> > weeks relief, only for very special

occasions etc..

> > So at that point, I left, feeling very

sheepish and went outside

> and

> > cried! I'm to see him again in 6

months, no doubt to discuss the

> > growth of my polyps! I had to wait

2 years for my first op, so

> maybe

> > I should have asked him to put me on the

waiting list now! I got

> the

> > impresssion he thought I was interfering

in something that I knew

> > little about. As we have a

National Health Service in the UK,

you

> > dont get to pick and choose consultants,

being in a relatively

> small

> > area, and with 3 teenagers to support,

private medicine is out of

> the

> > question.

> > So, friends, any ideas/thoughts on

self help? Do you all wash

> your

> > noses out daily? I only did that

for a couple of weeks after

> > surgery. Might it help to begin

again?

> >

> > I am feeling thoroughly depressed about

the whole thing, and the

> > realisation that I might never ever

smell the roses that grow in

my

> > garden or the honeysuckle in bloom, and

needless to say, cooking

is

> a

> > real chore - I just dont care anymore,

but force myself to stop

> > feeling sorry for myself and cook a big Sunday

roast dinner for

my

> > family. And its raining

again! at least Ireland earns its

> > reputation for being green and lush!

> >

> > Thanks for all the info, support and

encouragement.

> >

> > Cheers

> >

> > Al

> >

> > ps I'm going to try a glass of

white wine today, to see if I

> wheeze!

[Guest guest]

Lori - thanks for the help re Singulair - I've started taking 10mg a

day and am now wondering if it is safe for me to increase the dose to

20mg by myself. What info do you have re this and could you send it

to me? thanks

Meg - I usually just eat sensibly and in moderation (allowing a treat

once a week if I'm desperate), and after the first few days and the

benefits are beginning to show, its fairly easy, but I have to be in

the right frame of mind. At the moment I'm a real binge eater and

the food doesnt satisfy - its the physical act of eating that does!

I've always had this eating problem. I know some people who've done

the Weight Watchers diet, and I dont like the way they are allowed

biscuits and cakes for the same number of points that a bigger

quantity of 'healthy' food would cost. Still, never say never!

I'm going to start my diet/exercise regime on Monday, so I'll keep

you posted.

That operation for the sinus 'cyst' sounds very unpleasant and

complicated, and thankyou for reminding me that I'm really not as

badly off as others! Hang in there.

Cheers for all your interest and support as usual.

Ali

> Ali -- What dose of Singulair are you going to go on? I just want

to throw in my two cents as always about this -- take at LEAST 20

milligrams a day.

>

> If you want all the background information on why let me know, but

it hasn't been studied in people with as severe a disease as we have,

only in people with moderate asthma. So although ten milligrams a

day works for most people, it probably won't begin to tackle the

problem for us.

>

> I have research directly from the company who makes it on higher

doses of Singulair actually getting RID of nasal polyps completely.

>

> I can't answer your question about the aspirin and salicylates

because to be honest I think the stuff about the salicylates is a

load of crap. Dr. son at Scripps in California always does

these mini-challenges before the aspirin desensitization where he

gives them things like salicylates, tartrazine, etc, and he never

finds cross-reactions.

>

> There are some things I react to but I don't really believe it's

because they're salicylates. For instance, wine, beer, alcohol, all

have a fermentation process and I am very sensitive to fungus ...

>

> HTH

>

> Lori

[Guest guest]

Hi everyone I have tryed to find a place in NH around the seacost area

with no luck! Help does anyone know were I can go? And the bonus money

question is how can I get Medicade healthy kids gold/katie beckett to

pay for the treatments if I can find a place to treat him that is a

medicade provider. Thanks Kona

[Guest guest]

Hi you could look into wisconsin hyperbarics! Don't know about ins coverage.?

It wasn't covered for us!

Kristi in TN

www.westtennesseecares.org

Sent from my Verizon Wireless BlackBerry

[ ] Brick Wall

Hi everyone I have tryed to find a place in NH around the seacost area

with no luck! Help does anyone know were I can go? And the bonus money

question is how can I get Medicade healthy kids gold/katie beckett to

pay for the treatments if I can find a place to treat him that is a

medicade provider. Thanks Kona

[Guest guest]

Dear Sheree

If the medical practitioners are failing to take your condition

seriously and you are unable to afford private help, then you must accept that

you are left with little option but to be prepared to take your thyroid health

into your own hands. This is the appalling situation that tens of thousands of

us have been put into and if you read our web site www.tpa-uk.org.uk you will see that Dr

Barry Durrant-Peatfield has written an short article about sufferers being

forced to go down this road http://www.tpa-uk.org.uk/self_medication.php.

I am shocked beyond belief that other UK thyroid organisations are denying

their members the right to discuss self treatment and telling their members

'not to upset their doctors' and 'to work with them'. How can we continue to

'work with our doctors' who seem hell bent NOT to work with their patients. Self

treatment (and discussion) in the UK, is legal and quite necessary, and is

encouraged within the NHS, as it is recognised this is becoming more and more

necessary. Members join forums like ours because they are absolutely desperate

for help and support, which has been denied them. If we fail to help such

members, what is left for them with their badly educated and ill-mannered doctors?

ME, CFS (chronic fatigue syndrome) and FM (fibromyalgia) are

all symptoms of hypothyroidism, and all three of these are highly

treatable with the active thyroid hormone T3. It is T3 that every cell in our

body and brain needs to make them function. Your last blood test results prove

that you are suffering with hypothyroidism. Your TSH is way over the top of the

reference range of 0.3 to 3.0 in the US and 0.3 to 2.5 in Sweden, Germany,

Belgium and other countries in Europe. Your free T4 is practically negligible.

The reference range for fT4 is usually around 9.0 to 22 and yours shows just

over 3 points from the bottom of the reference range. Free T4 for somebody

taking no thyroid hormone replacement should be above the middle of the range,

which would mean yours should be around 17or 18.

As autoimmune diseases run in your family, your

GP/Endocrinologist should be testing to see whether you are suffering with

antibodies to your thyroid. These are TPO and TgAb.

I would challenge the letter your endocrinologist sent to your

GP but you need to do this in writing, asking for a copy to be placed

into your medical notes, sending a copy to your GP, sending a copy to

your local Primary Care Trust (by way of initiating a possible complaint if

action is not taken) and keeping a copy for yourself in case this is needed at

a later date.

First, list again your symptoms but attach these to the actual

letter, otherwise, the letter may become too long to read. Start off by telling

the endocrinologist you are extremely unhappy with her interpretation of your

conversation to your GP and that you wish these 'contradictions' of your actual

conversation, to be addressed in writing, both to yourself and to your GP and

for the correct information to be placed into your Medical Notes within the

following 7 working days.

State first that you have attached a full list of all your

symptoms and write down also all the 'signs' that you are showing. You can

check these against those in our web site www.tpa-uk.org.uk

under 'Hypothyroidism' and then under 'Symptoms and Signs'.

If you have a copy of the letter she wrote too your GP, then

list everything she has written that is wrong, giving the true facts at the

side. This should help jog her memory. If you have letters or other evidence to

help back up what you stated, attach copies of these too. e.g. information from

your Optician stating your visual condition is the worst he has seen etc.

Next, give a full list of the members of your family who have a

thyroid or autoimmune disease.

Next, ask for a FULL thyroid function test that should include

TSH, free T4, free T3 and TPO, TgAb. Ask also for the following specific

minerals and vitamins to be tested and enclose a copy of just a few of the

references to the research/studies done to show of the association of low

levels of these specific nutrients and low thyroid. These are iron, transferrin

saturation%, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. Ask

that all the results of these be passed to you when they have been done,

together with the reference range for each of the tests done. Tell her in your

letter that if she reads the papers, she will see that no amount of thyroid

hormone can be properly utilised at the cellular level until whatever is low

has been recognised and supplemented to bring the level to where it should be

in the reference range.

I would not mention in your letter to the endocrinologist that

you will not be returning for any more appointments because you have no faith

in her ability to treat hypothyroidism whatsoever, until you have received a

further response to your letter, but I would let the local Primary Care Trust

know and also your GP. She must NOT be allowed to carry on abusing patients in

this way - appalling isn't a strong enough word.

Sadly, it is because the majority of patients let their doctors

get away with such behaviour that they continue to carry on, because we were

brought up to believe they are 'gods' which they are not.

Perhaps though, it might be a good idea to remind your

endocrinologist of her duties as a doctor registered with the General Medical

Council - read the following, it just might open your eyes to exactly how

badly this doctor is treating you http://www.patient.co.uk/doctor/Ideals-and-the-Hippocratic-Oath.htm

..

The next thing you should do is to ask the Primary Care Trust to

find you another GP who actually CARES about his/her patients and who will do whatever

s/he can to give them back normal health.

You don't have to continue to suffer in this way and we will do

everything that we can to help and support you.

Luv - Sheila

I believe without a shadow of a doubt that I am suffering from hypothyroidism

and that this is the cause of all my symptoms and the catastrophic decline in

my mental health. I have no money whatsoever to seek private treatment and my

GP thinks I am a joke. I would like to make sure that my symptoms do go into my

medical records so that my family have this as evidence should the worst

happen. Please could someone also advise me of what will happen to me if I

remain untreated much longer? I am genuinely scared. Thanks for your help and I

look forward to all replies.

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4721 - Release Date: 01/03/12

1 of 1 File(s)

MINERALS AND VIT. TESTING.doc

[Guest guest]

EDITED TO REMOVE PREVIOUS MESSAGES

Moderator

Dear Sheree,

I was diagnosed with Fibromyalgia/ME nearly 5 years ago. My health has

been going downhill at a rapid rate this last 12 months. Like yourself I

have seen numerous " specialists " , even having been hospitalised for 3

weeks because I could not cope with the pain.

I spent more months in hospital with pain, high bp( 210 over 160 !!! in

my medical notes which I have it states " cases of unexplained high BP

are normal " ....what a joke, severe constipation and a whole host of

other symptoms. I was even taken back in because I had severe headaches

24 hours a day ( brain scan was negative). I have had every inch of me

scanned, I was convinced that i had some sort of bone cancer because of

the pain.

I have regular problems with my bladder...one day i went 45 times. Saw a

urologist....bladder is fine no problems.

I have seen rheumatologists ( both NHs and private) told it was all in

my head. Politely asked them to discharge me and not waste my time or

insult my intelligence.

Have seen neurologists for headaches and unexplained " electric shock

feelings over my body "

I suffered with reflux which was so bad I had to have surgery.

I suffered with endometriosis as a teenager up into my 30's. This

resulted in struggling to conceive and cost me my first marriage.

My mother sufferered with schizophrenia and passed away and my sister

has the same condition. Many doctors latched on to this and as i said

previously that " it was all in my head " .

I could go on and on with my story, but i am telling you this because

YOU MUST NOT GIVE UP. I found my way to this website in July and started

to read other members stories and a whole lot more of the information (

in small chunks mind....fibro fog got in the way) and a light bulb was

switched on...

My NHS blood tests came back as " normal " so I paid to have the T3 urine

test and it showed that my T3 level was very low. I saw Dr P in November

and he gave me a treatment plan. I have as he advised probably had a

thyroid problem for years but like many it was undiagnosed and many

specialists have missed some " classic symptoms " .

Are you able to get to see to see Dr P?. I am sure that like me he could

help you along with the other fantastic members on this website. I start

my first dose of T3 this week-end, and if I am honest I feel scared

about it, but I know that I must be responsible for my own health as the

NHS has let me down.

Love, Hugs and Best Wishes to You

Dawn

>

> I was diagnosed with 'M.E.' in 2010. .>

> >

> I completed the tpa symptoms checklist shortly before being seen at a

the department of endocrinology at a hospital in my area in August 2011,

and handed this into my GP in July 2011 in preparation. I then handed in

another checklist in October 2011 listing 90 symptoms and counting.

Despite this, I had a disastrous appointment with the 'specialist' in

August 2011 at the aforementioned hospital, whose failure to take down

my symptoms and ask relevant questions was so poor that I was forced to

complain.

[Guest guest]

PLEASE DELETE PREVIOUS MESSAGES BEFORE REPLYING

Moderator

Hi Dawn,

Thanks so much for your reply, I can relate to everything you have written, and

I too am sick and tired of endless tests when it is so very obvious what is

wrong with me. My plan is to follow Sheila's advice and ditch my current GP

practice, and find a doctor who is actually going to work with me. I will not

give up, it has cost me far too much already.

Thanks for your support and good luck with the T3. Wishing you the very best of

health,

Sheree

> My mother sufferered with schizophrenia and passed away and my sister

> has the same condition. Many doctors latched on to this and as i said

> previously that " it was all in my head " .

>

> I could go on and on with my story, but i am telling you this because

> YOU MUST NOT GIVE UP. I found my way to this website in July and started

> to read other members stories and a whole lot more of the information (

>

[Guest guest]

Hi

Thanks for your reply, I am taking Sheila's advice and changing GP with the help

of the PCT and in future I will be taking a witness to every appointment

regardless. I am not going to give up. Thanks for all the information, it is

most helpful.

Best wishes, Sheree

' in 2010 despite a rising TSH. My last blood test was in August 2011 where the

specialst wrote that my thyroid function tests were 'normal' with a TSH of 4.2

(0.27 to 4.20) and a Free T4 of 12.9. Autoimmune and thyroid issues run in my

family.

[Ed]

[Guest guest]

Hi some cases of mental illness are due to being hypo.! ummmm i wonder how many other symptoms are hypo/hyper. me thinks a lot. their is a good site for this- called thyromind. angel.

[Guest guest]

FROM SHEREE IN RESPONSE TO MY MESSAGE TO HER. THIS WAS SENT TO ME PRIVATELY BUT SHOULD BE ON THE FORUM SO HER STORY CAN BE FOLLOWED THROUGH.

_________________________

Hi Sheila,

Thank you so much for your reply. When I went to the appointment with the endocrinologist in August thank god I took my sister, who is as furious as I am about the appalling inconsistencies written in the letter to my GP from the specialist, as I really had high hopes for this department. I have had an apology, and there seems to have been an investigation into what went on. I have sent a second letter in reply to the letter of apology, as I am insisting that the information is corrected and that this is shown very clearly in my records. I am waiting for confirmation that this has been done. I was particularly upset that the specialist wrote that my bowels and bladder were normal as I had clearly told her that I am chronically constipated and when asked if I bled, replied yes. I now have a prolapse.

I was never asked about my bladder, and have to urinate constantly, and I have become incontinent. I am particularly worried about my symptoms as ovarian and cervical cancer are present in my family and my mother was treated at Christies. It is really important that the correct symptoms are recorded as I also have abdominal pain, irregular bleeding and bloating. If I did have another medical problem, this could have been missed completely, and I now have to face even more tests with a gynecologist which I am absolutely dreading. As for your advice about changing GP, I will DEFINITELY be following your advice this time! My sister has been nagging me for months to do this, and I have hung on because the surgery is just across the road from me, and very convenient when I'm really ill.

My sister has been treated for thyroid problems herself and has given two of the doctors a piece of her mind whilst accompanying me to appointments, and has even accused them of neglect, this was NOT appreciated, and one GP even asked her to wait in reception to which we both loudly replied No! We have become quite unpopular, but who cares, they are not suffering needlessly. One GP at this practice told me that there is no such thing as secondary hypothyroidism, another bright spark there told me that a person is only tested for thyroid antibodies if they have had them since birth, this particular person also told me that my swollen gums and tooth pain had nothing to do with my chronic sinusitis, as it does not affect the mouth or gums, and they knew this because a member of their family is a dentist. After being examined by my dentist, she did indeed confirm that the mouth and gums are affected by the sinuses, and as my gums and teeth were ok, the pressure and pain I was experiencing was being caused by the sinuses!

This particular GP also dismissed a significant change in my heartbeat as 'anxiety', yet a few days later I was diagnosed with a heart murmur. Another GP at this practice treated psoriasis with E45 cream until another colleague actually spotted what was wrong when the condition became much worse. My plan is to make sure that the correct information is placed in my records and then to find a better GP with the help of the PCT as it is clear that my current surgery is never going to help me to get the treatment that I need. I am also discharging myself from the M.E. clinic as I find it appalling that I am being referred to mental health and offered anti-depressants when they make me feel so much worse. I will not be seen by the M.E. clinic for four more months and I was not offered any sort of treatment or relief for my physical symptoms. I could tell that the nurse assisting the consultant was genuinely angry at his response as I ended up in floods of tears. At least some medical staff are listening! Thank you so much for your help, best wishes, Sheree> > Sadly, it is because the majority of patients let their doctors get away> with such behaviour that they continue to carry on, because we were brought> up to believe they are 'gods' which they are not.> > Perhaps though, it might be a good idea to remind your endocrinologist of> her duties as a doctor registered with the General Medical Council - read> the following, it just might open your eyes to exactly how badly this doctor> is treating you> http://www.patient.co.uk/doctor/Ideals-and-the-Hippocratic-Oath.htm . > > The next thing you should do is to ask the Primary Care Trust to find you> another GP who actually CARES about his/her patients and who will do> whatever s/he can to give them back normal health.> > You don't have to continue to suffer in this way and we will do everything> that we can to help and support you.> > Luv - Sheila

[Guest guest]

Hi Sheila,Sorry about the private message! I didn't realize that this wasn't allowed, I'm still finding my way around the forum. Thanks to everyone for all replies, it has made all the difference in the world.Sheree

[Guest guest]

Please let us know how you get on. People on here will do their best to help

you....

chris

>

>

>

> Hi

>

> Thanks for your reply, I am taking Sheila's advice and changing GP with the

help of the PCT and in future I will be taking a witness to every appointment

regardless. I am not going to give up. Thanks for all the information, it is

most helpful.

>

[Guest guest]

Hi Sheree, it's not just a case of private messaging not being

allowed without first asking if this is OK, it is mainly the fact that with

over 2720 members, I am completely unable to respond to messages on a one to

one basis, as the forum is so busy, and I get tons of private emails that need

responses direct from our web site.

Keep asking questions Sheree, you will find answers, and never

be afraid to ask again and again and again, if somebody hasn't got back to you.

There is light at the end of the tunnel and we will help you

find it.

Luv - Sheila

Hi Sheila,

Sorry

about the private message! I didn't realize that this wasn't allowed, I'm still

finding my way around the forum. Thanks to everyone for all replies, it

has made all the difference in the world.

Sheree

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