Re: Can we help this poor woman??

[Guest guest]

On Thu, 25 Nov 2010 09:15:16 +0000, you wrote:

>

>Can we help her get the right tests??

>

>the chances are it's adrenal and thyroid again!

Found her husbands phone number, will try and make contact

Nick

[Guest guest]

Blessings for people like you..

This is so sad and scary...

Jaki

>Can we help her get the right tests??>>the chances are it's adrenal and thyroid again!Found her husbands phone number, will try and make contactNick

[Guest guest]

I have just written a letter to Oliver Letwin MP and told him

about the work we do at TPA and how many people given a diagnosis of CFS, FM

and ME can be treated using the active thyroid hormone T3. I said much more,

but asked if he will get in touch with me for more information. I have told him

about Dr P and asked if he would pass the information on to her husband. Will

let you know if anything comes from this.

Luv - Sheila

Hi

Just seen this

http://www.bbc.co.uk/news/uk-england-dorset-11830123

Can we help her get the right tests??

the chances are it's adrenal and thyroid again!

Nick

[Guest guest]

On Thu, 25 Nov 2010 12:23:48 -0000, you wrote:

>I have just written a letter to Oliver Letwin MP and told him about the work

>we do at TPA and how many people given a diagnosis of CFS, FM and ME can be

>treated using the active thyroid hormone T3. I said much more, but asked if

>he will get in touch with me for more information. I have told him about Dr

>P and asked if he would pass the information on to her husband. Will let you

>know if anything comes from this.

Thanks. I have a phone number and will ring him this evening, there is

no reply at the moment

Nick

[Guest guest]

I will help...maybe we donate the money for a saliva test and thyroid panel?

>

> Hi

>

> Just seen this

>

> http://www.bbc.co.uk/news/uk-england-dorset-11830123

>

> Can we help her get the right tests??

>

> the chances are it's adrenal and thyroid again!

>

> Nick

>

[Guest guest]

Tell him to contact me Nick as we have so many members who

have been given a diagnosis of CFS and FM who only needed thyroid hormone

replacement using T3. Also, he might wish to see Dr P.

Luv - Sheila

On Thu, 25 Nov 2010 09:15:16 +0000, you wrote:

>

>Can we help her get the right tests??

>

>the chances are it's adrenal and thyroid again!

Found her husbands phone number, will try and make contact

Nick

[Guest guest]

Dear Nick

Regarding this poor poor woman whom you have brought to our

attention.

Phew! This has really upset me in more ways than one, and given me

cause to count my blessings. Having struggled for most of my life

and being one of the walking wounded I finally collapsed after the

traumatic death of my daughter whilst waiting almost two years for

an inquest. I had no idea what was wrong but GPs diagnosed me as

having ME & fibromyalgia - never heard of the latter before.

This was later confirmed by a rheuamatologist who said that unless I

got up out of the wheelchair I was in I would never walk again. I

could hardly hold up my head. I was once, bedridden for months(not

years fortunately) and unable to do anything for myself. I

alternated between bed and a recliner for years. My husband did

everything even washing me and combing my hair and cooking all my

meals. My life as I had known it had finished. But then somehow we

learnt of The Fibromyalgia Clinic in London. I remember travelling

there lying down and supported with pillows and being wheeled in to

see the doctor. As I sat in front of her my legs took it in turns

to leap 18" off the floor and slam down again as the spasms were so

fierce. This doctor first of all ran a load of bloods but started

me on HC and then Armour. It was as though a light had been

switched on. However, I was too ill to comprehend what this

treatment was for but all I knew was that I had 'seen the light'.

Sadly this doctor became ill and went on long term sick. After this

my hunt went on to find someone else to continue what this doctor

had begun. I did not know that I had adrenal thyroid problems or I

was too ill to understand.

I have spent thousands of pounds seeing numerous doctors who have

plied me with their goods and taken my money to no avail on the

whole. I gradually made some improvement intermittently between

bouts of being bedridden for a month or so. I could not walk and

nor could I speak very well and when I did I could only speak with

my eyes closed as too much sensory information made me even

worse(something which still troubles me even now at times). But in

my pursuit I eventually discovered that my adrenals are very bad and

along with that my thyroid is out of sync. I give gratitude to all

of those people both seen and unseen, those who send good wishes and

all those who shown kindness, all are helping to restore me to

health and I shall be eternally grateful. I am now able to take my

little dog for a short walk and haven't used my electric scooter for

several weeks. I can potter around the house and do odd jobs -

nothing much as yet but I have hope that I will get my life back

and I am so grateful for all the helping hands and advice give.

I have not written this not out of self pity but in the hope that

somehow, someone can reach out to this poor woman you have directed

us to and that she too may be helped in the same way. Poor, poor

woman. It reminds me of the young woman who was helped to die by

her mother a few months back as she was in a similar if not worse

state than this woman.

After attending another doctor at the ME centre in borough, the

doctor there said she had seen many ME patients who take Armour but

it hadn't made a bit of difference. Did she ever give thought that

it might be adrenal problems? I think not. All she said to me is

'you have so many problems (concerning my heart and PTSD) I don't

know what I can do if anything. What was offered was pacing and

light exercise when I was in a wheelchair propping my head on my

hand and in so much pain URGH!

What can anyone do for the woman you mention? I do hope that

someone can reach her but I am not sure I have the strength that it

would take to communicate everything and I am still too foggy

brained to be of benefit anyway. It needs someone far more

knowledgeable than me.

Best wishes in your endeavours Nick.

Audrey

[Guest guest]

I think it's truly wonderful to be reaching out to help this poor woman, I hope

she becomes enlighted and well again. It's so sad to think there are thousands

of people like this.

A collection would be a very generous idea, I know you can set up a website to

be sponsored so maybe you could do the same for donating via paypal or

something?

What I don't understand is how these specialist ME centres actually help the

patient to improve?? if they don't treat them with adrenal support or thyroid

hormone how do the patients get better?

>

> >

> >Can we help her get the right tests??

> >

> >the chances are it's adrenal and thyroid again!

>

> Found her husbands phone number, will try and make contact

>

> Nick

>

[Guest guest]

2006/7 was a very bad time for myself and my ME/CFS got worse, to subsequently

learn that it was treatable with adrenal supplements and adequate thyroid

treatment. I'm still in a quandry how much all of this is ME/CFS and if even now

somehow thyroid side of things are still not right, but at least things are

heading in the right direction.

I can see how somebody could end up in this situation. There is a lot of

" That'll be the ME " only patients find medically in the mainstream system there

is nothing they do for that anyway. Of course the pacing and resting strategies

but not medically. I believe the day you agree with all this " Isn't it the

CFS/ME " then you are effectively agreeing to no more help on the NHS.

I really hope this lady gets some help she needs and who knows thyroid and

adrenals may well be half of her trouble. You don't know if you don't

investigate.

Fiona

[Guest guest]

On Thu, 25 Nov 2010 13:41:10 -0000, you wrote:

>Tell him to contact me Nick as we have so many members who have been given a

>diagnosis of CFS and FM who only needed thyroid hormone replacement using

>T3. Also, he might wish to see Dr P.

I am going to try and get him on the phone and suggest he checks

temperature as a first thing, such a cheap test and says so much.

Nick

[Guest guest]

> What I don't understand is how these specialist ME centres actually help the

patient to improve?? if they don't treat them with adrenal support or thyroid

hormone how do the patients get better?

>

I have never seen an NHS ME/CFS doctor! physio and ME nurse, psychology yes! The

main 'treatment' has been lifestyle management and getting you to adjust to your

limitations, pacing and rest periods.

In my experience it has only been going to the private sector, where you can get

special blood tests that show up deficiencies and get advice on proper

supplements, things like nickel, Lymes disease. All those sorts of things are

other things that are commonly missed and assumed it's CFS and untreatable.

Private doctors can recommend things like Low Dose Naltrexone, which there has

been a lot of talk about.

But as you say, I am not sure what a medical doctor in an ME clinic does.

perhaps it's get patients to have further blood tests, or recommend better pain

killers etc. No doubt it's a doctor to supposedly rule out potential new

diagnosis, things like hypothyroidism. We all know the controversies, so would

they assume somebody is fine if they are on 100mcg Levothyroxine, no

supplements, no T3 or no Armour.

But I really don't believe the mainstream system is in a position to be fully

treating or ruling out thyroid and adrenal problems, before putting people on

the scrap-heap, same with other things I have touched on.

Fiona

[Guest guest]

>

>> What I don't understand is how these specialist ME centres actually help the

patient to improve?? if they don't treat them with adrenal support or thyroid

hormone how do the patients get better?

>

The answer is they don't. They offer CBT and Graded Exercise Therapy at best.

GPs are sceptical. The thing to know about people with ME is that they often

have an immune system breakdown which becomes a vicious circle of Adrenal

insufficiency, toxin/heavy metal build up and intolerance/gut issues. Whilst the

government puts its head in the sand and denies ME the medical research funding

it so desperately needs, ME sufferers are left to foot the bill for tests and

treatment which they can ill afford. So alot of people with ME bump along the

bottom. The situation is beyond disgraceful.

[Guest guest]

When every person who had been given a diagnosis of

hypothyroidism was treated with natural desiccated porcine thyroid extract,

there was no such diagnoses as fibromyalgia, CFS or ME. However, in the middle

of the 1970's when synthetic thyroxine was manufactured and everybody was told

it was the 'gold standard' and it did everything that thyroid extract did, NDT

fell out of favour and everybody was started on levothyroxine-only. At the same

time, serum thyroid function testing came in and doctors followed these results

when trying to reach a diagnosis of hypothyroidism or titrating the

levothyroxine dose. Only then did it come to light that many, many

patients started to complain that they symptoms were returning with a

vengeance. Because the patient was already taking levothyroxine and their

TFT's were within the normal range, doctors didn't know what was wrong with

them, and this was when they brought in the diagnoses of FM, CFS and ME.

Little did they realise that those folk not doing well were

suffering with either thyroid hormone resistance or peripheral thyroid hormone

deficiencies because the T4 was not converting to the active thyroid hormone

T3. The natural thyroid extract they had been on before contained T4, T3, T2,

T1 and calcitonin so they got well on NDT. Now they are only getting the mainly

inactive T4.

What's wrong with these doctors that they can't put two and two

together and make four. If they started to recognise low adrenal reserve and

tested free T3 and reverse T3, and then treated with adrenal supplements and

T3, their patients would have no need of such diagnoses or be told there is

nothing anybody can do for them.

Luv - Sheila

2006/7 was a very bad time for myself and my

ME/CFS got worse, to subsequently learn that it was treatable with adrenal

supplements and adequate thyroid treatment. I'm still in a quandry how much all

of this is ME/CFS and if even now somehow thyroid side of things are still not

right, but at least things are heading in the right direction.

I can see how somebody could end up in this situation. There is a lot of

" That'll be the ME " only patients find medically in the mainstream

system there is nothing they do for that anyway. Of course the pacing and

resting strategies but not medically. I believe the day you agree with all this

" Isn't it the CFS/ME " then you are effectively agreeing to no more

help on the NHS.

[Guest guest]

Dear Nick

It is so kind of you to contact this lady's family and offer your advice. I was

struck down with ME when i was 23, very suddenly and was bedbound for many

years. I used to dream of someone coming to my rescue and offering me some

help. Your advice will mean so much to them, and i often read your posts and

know how knowledgeable you are.

I didnt find out about the adrenal/thyroid connection until 8 years in to my

illness but i think if i had been given HC and NT when i first became ill i

would have recovered. I really hope the treatment helps her and i think youre

great for trying to help.

Take care

Leisa x

>

> >

> >Can we help her get the right tests??

> >

> >the chances are it's adrenal and thyroid again!

>

> Found her husbands phone number, will try and make contact

>

> Nick

>

[Guest guest]

I don't want to be controversial, but ME (Myalgic Encephalomyelitis) has been

classified as a neurological condition by the World Health Organisation since

1969, although it is seen in the medical literature prior to that, certainly in

the 50s and 60s and some would say before that. The problems really started

when the useless name " chronic fatigue syndrome " came into being in the late

1980s, with many people given a label of " CFS " , including many ME sufferers as

well as those with conditions with no neurological signs and some psychiatric

disorders; thus CFS became something of a rag-bag diagnosis with much of the

" treatment " offered being of a psychiatic nature - something that is completely

inappropriate for those with ME. ME, on the other hand, is a multi-system

failure with neurological, immunological, endocrine, gastrointestinal,

cardiovascular and musculoskeletal features. For further details, see

http://www.meactionuk.org.uk/

I would agree that most people with ME have endocrine problems (I do!) and that

these are often not addressed - and that they could well improve if these

problems were addressed - but there is more to ME than endocrine problems alone.

BW.

Hazel.

www.oneagleswings.me.uk

http://oneagleswingsme.blogspot.com/

>

> When every person who had been given a diagnosis of hypothyroidism was

> treated with natural desiccated porcine thyroid extract, there was no such

> diagnoses as fibromyalgia, CFS or ME. However, in the middle of the 1970's

> when synthetic thyroxine was manufactured and everybody was told it was the

> 'gold standard' and it did everything that thyroid extract did, NDT fell out

> of favour and everybody was started on levothyroxine-only. At the same time,

> serum thyroid function testing came in and doctors followed these results

> when trying to reach a diagnosis of hypothyroidism or titrating the

> levothyroxine dose. Only then did it come to light that many, many patients

> started to complain that they symptoms were returning with a vengeance.

[Guest guest]

Hi Hazel, yes, I am very

aware that ME has been classified as a neurological condition by the WHO and more

recently a study, published in the journal 'Science', shows that the virus,

called murine leukaemia virus-related virus (XMRV), was found in 68 of 101

patients from around the US with CFS/ME. The senior author of the study said

further blood tests have revealed that more than 95 per cent of patients with

the syndrome have antibodies to the virus – indicating they have been

infected with XMRV, which can lie dormant within a patient's DNA. " With

those numbers, I would say, yes we've found the cause of chronic fatigue

syndrome. We also have data showing that the virus attacks the human immune

system, " said Dr Mikovits. She is testing a further 500 blood samples gathered

from chronic fatigue patients diagnosed in London. " The same percentages

are holding up, " she said. http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html

The point I am making is that

there are many, many sufferers who have been given a diagnosis of CFS/ME and

who have been left with no treatment, who should not have been, because their problems

are caused because of low thyroid and/or adrenals, both of which can be treated

successfully. Because of the constraints placed on doctors e.g. being told by

the BTA and RCP that a patient does not have a thyroid problem if their thyroid

function tests are within the so called 'normal' reference intervals etc. many

of them are being given a diagnosis of ME, CFS or FM.

Luv - Sheila

I don't want to be controversial, but ME (Myalgic Encephalomyelitis) has been

classified as a neurological condition by the World Health Organisation since

1969, although it is seen in the medical literature prior to that, certainly in

the 50s and 60s and some would say before that. The problems really started

when the useless name " chronic fatigue syndrome " came into being in

the late 1980s, with many people given a label of " CFS " , including

many ME sufferers as well as those with conditions with no neurological signs

and some psychiatric disorders; thus CFS became something of a rag-bag

diagnosis with much of the " treatment " offered being of a psychiatic

nature - something that is completely inappropriate for those with ME. ME, on

the other hand, is a multi-system failure with neurological, immunological,

endocrine, gastrointestinal, cardiovascular and musculoskeletal features. For

further details, see http://www.meactionuk.org.uk/

I would agree that most people with ME have endocrine problems (I do!) and that

these are often not addressed - and that they could well improve if these

problems were addressed - but there is more to ME than endocrine problems

alone.

BW.

Hazel.

[Guest guest]

Whatever we want to call it ME/CFS or class it as two seperate things: One way

or another whatever you are told you have, you are left to rot with no

mainstream medical help anyway. One way or another you don't get neurological

based treatment, despite any classification.

Once you have ME/CFS on your records, I am convinced it goes against you and any

problems you have it's " Isn't it the CFS " from substandard thyroid dose, to

symptoms that you are convinced are seperate from the thyroid, such as the

muscle solidness I was suffering. The best I ever got offered was sent to

physio, who then didn't know what to do with me.

All I know is that I had shingles in Dec 2002 and had a persistent annual

decline until thyroid and adrenal treatment. I know for a fact that poor thyroid

and adrenals was the cause of me going practically bed-ridden and using a

wheelchair or mobility scooter. When you get that ill, never mind as ill as the

individual in the article, it is a scandal that people are left to rot.

I'll never know if I took some sort ot treatment from the outset if all this

would have been prevented, but you don't initially think thyroid because tests

are supposedly done and come back normal. Or you go more ill and are told

" That'll be the ME " and other tests not done and sent to a wheelchair place

because after all many people with ME are very ill and you have been ill a long

time and you are not going to have anything treatable...

The whole thing is a mess isn't it.

I am still unsure how well it's possible for me to get and who knows any

shortfall in functioning could be due to something like XMRV that is in the

infancy in research terms.

Fiona

[Guest guest]

Dear Fiona

How I agree with all you say about being given a label and left to rot.

On one occasion I was having my hair done at home, it had just been

washed when I felt mostill. The pains down my arms were unbearable and

I felt sick and faint. I was almost carried to my bed and a doctor sent

for. When he arrived I explained about the pains that nhad come on very

suddenly and at that I vomited , all typical signs of a heart attack.

He first of all said the usual 'well of course you do suffer from

fibromyalgia' and the sickness was put down to a bug and he left. It

was after suffering a second H/A (when I immediately went to A & E and

rushed through to a ward that the tests showed that I had, indeed,

already suffered one heart attack. Once you have a name for your

symptoms everything gets put down to it I do agree. But I am also

accepting of the neurological and viral theories of FMS/ME however I

have been helped immensely by taking HC and adrenal support plus thyroid

meds. If I never fully recover I am now up and about and have a better

quality of life. So may this poor woman find even some slight relief

and also her family. My husband was an absolute brick through all of

this and still is but I now require his help less and less. He is a very

ill man now so we nudge along as best we are able.

Best wishes

Audrey

[Guest guest]

Has anyone had any luck contacting this woman or her husband?

> Found her husbands phone number, will try and make contact

>

> Nick

>

[Guest guest]

On Sat, 27 Nov 2010 01:11:08 -0000, you wrote:

>

>Has anyone had any luck contacting this woman or her husband?

Not yet, answerphone every time so far. I will leave a message on it

this time and ask him to ring me back as I will be able to stay near a

phone today

Nick

[Guest guest]

I too tried and keep getting the answerphone. Perhaps he gets so

many calls he doesn't answer the phone and then he does 1471 to see whether he

recognises the number or not - and if not, doesn't call back.

Luv - Sheila

On Sat, 27 Nov 2010 01:11:08 -0000, you wrote:

>

>Has anyone had any luck contacting this woman or her husband?

Not yet, answerphone every time so far. I will leave a message on it

this time and ask him to ring me back as I will be able to stay near a

phone today

Nick

[Guest guest]

Dear Nick, Sheila and others,

I must say that I was very relieved to see your messages on here. I only just

came across the newspaper article online today and wondered what I could do to

help. Then I came on the forum and saw your responses. I feel so much for this

woman and her family. If you manage to get in touch with her husband and he

needs people to write letters to the authorities/politicians/whoever, please

send me an email, as I would be very happy to help out in this way.

P

>

> Hi

>

> Just seen this

>

> http://www.bbc.co.uk/news/uk-england-dorset-11830123

>

> Can we help her get the right tests??

>

> the chances are it's adrenal and thyroid again!

>

> Nick

>

[Guest guest]

Hi All,

I never had such severe symptoms as the lady in the news article, but I was

given a diagnosis of CFS. The NHS response to this was to refer me for

physiotherapy (graded exercise), even though any kind of physical activity left

me exhausted and in pain. I was also referred to the Pain Team in occupational

therapy, to " learn how to live with the pain " . This after just 6 months of

illness. My " CFS " was actually hypothyroid symptoms plus adrenal fatigue. TPA

and Dr P helped me sort things out.

I've got my T3 and prednisolone dose spot on just now and I feel great!

Thanks to everyone who is reaching out to help the lady on the news.

Sue

xx

>

> Dear Nick, Sheila and others,

> I must say that I was very relieved to see your messages on here. I only just

came across the newspaper article online today and wondered what I could do to

help. Then I came on the forum and saw your responses. I feel so much for this

woman and her family. If you manage to get in touch with her husband and he

needs people to write letters to the authorities/politicians/whoever, please

send me an email, as I would be very happy to help out in this way.

> P

>

[Ed]

[Guest guest]

Thank you P - I tried again today to phone but still no

response. I am waiting now to hear from Oliver Letwin MP, but he may not work

weekends. If he can just pass on the details to this poor lady's husband and he

can take it from there. I hope he gets in touch.

Luv - Sheila

Dear Nick, Sheila and others,

I must say that I was very relieved to see your messages on here. I only just

came across the newspaper article online today and wondered what I could do to

help. Then I came on the forum and saw your responses. I feel so much for this

woman and her family. If you manage to get in touch with her husband and he

needs people to write letters to the authorities/politicians/whoever, please

send me an email, as I would be very happy to help out in this way.

P

[Guest guest]

Hi everyone,

I wrote an email to the local paper, and they have put this story on the front

page today. (Sa) There is a bit of additional information, which is that the

symptoms of ME started 10 years ago after a bout of Glandular Fever.....

I too, had glandular fever and my thyroid stopped not long after...

I have written the husband a note giving him this web site address and the web

address of DR john Lowe. I've also sent him my copy of Tears Behind Closed

Ddoors By Dianne Holmes, as she was diagnosed with ME but it turned out to be

thyroid.

x