Re: denied treatment ..

[Guest guest]

>> I have thyroid peroxidase antibodies of more than 1300, i feel so tired and its not a good feeling when u have two young kids ..the endo yesterday said that we will have to wait and see ,ur thyroid mighyt get bad in 5 years ..i was shocked because the way i feel now means i am sick...puffy face,tired muscles ,diffuse hairloss ,weight gain,joint pain .very painful periods & he wants to wait another 5 years .Thankgod i have found this group because i really needed to express my feelings to sumone.i want to go and see dr skinner but its not possible till the end of july ..I feel so lonely with this disease as no matter how hard i try i cant lose weight..its really bring my self esteem down

Hello Ansar,

Sorry to hear how much you are struggling.It really is impossible when you have young children to look after.

As far as the Endo's comments go....that is completely unacceptable.I wish you'd had the courage to ask him if HE could continue for another 5 years feeling chronically unwell.It makes me soooooooooo damned angry.

Do you have the results of your blood tests to hand or have you just been told they are 'normal'? I would try and get copies but be prepared.....they may well try and be obstructive.Anything to prevent you knowing details about your own health!!!

Probably the only way forward is to see Dr Skinner but you might have another problem there as he requires a referral from your GP.Would he be prepared to do that? I do hope so.It sounds to me like you need treatment NOW,not in 5 years time.

Depending on your blood results it might be an idea to get hold of a paper by Professor Weetman(Dean at Sheffield University)In it he explains that a TSH result of 2 or over is indicitive of future overt hypothyroidism and it made sense to treat SOONER rather than later.

That paper is the only decent thing he's come out with in the last decade but he is highly respected by his peers so it might just help.You have to just play along with these clowns to get what you need in the end.And that's thyroid hormone!

Good luck,

Peary

[Guest guest]

Ansar,

You were right to be shocked. You have high amounts of thyroid antibodies

which means you have Hashimotos disease, These antibodies attack the thyroid

until it eventually gives up. The thyroid struggles and has to be pushed more

and more by way of increased Throid stimulating hormone (TSH) just to produce

enough thyroid hormones to keep you running. You cannot get rid of the

antibodies and they will attack your thyroid.

Have you had any blood tests? If so, obtain a copy of these, (they are yours by

right and they HAVE to be given to you) and post them on here, then we can see

where you are and advise what we think you should do.

Is the endo a specialist in thyroid or is he a diabetes sprecialist... it makes

a difference, Check him out on http://www.drfosterhealth.co.uk.

Worth getting a proper diagnosis from the NHS because then you get free

prescriptions and 'care', but without it it's still possible to do it yourself,

as many of us have done.

Read up as much as you can take in,, loads of info in the files and in these

posts...

.

>

> I have thyroid peroxidase antibodies of more than 1300, i feel so tired and

its not a good feeling when u have two young kids ..the endo yesterday said that

we will have to wait and see ,ur thyroid mighyt get bad in 5 years

[Guest guest]

Thanku so much Peary ,i am so tired today ,body aching like a 90 years old (

as i have just started my periods and maybe that flares things up..really am

confused .

yes i want treatment soon ,have spoken to the GP & he asked why would i want to

see a dr skinner who does not belong to the area.i wanted to say because u guys

r not treating me and i want my health back .

he said he will speak with my endo,then he will give a referal.sound s like they

r in no hurry ..

OLD POSTS DELETED BY MODERATOR. PLEASE TRIM OLD POSTS BEFORE SENDING REPLY>

THANK YOU

>

> Probably the only way forward is to see Dr Skinner but you might have

> another problem there as he requires a referral from your GP.Would he be

> prepared to do that? I do hope so.It sounds to me like you need

> treatment NOW,not in 5 years time.

>

> Peary

________________________________________________________________---

[Guest guest]

thanku Galathea for replying dear u r right,i spoke to mary shomon in USA ,i

booked a phone consultation with her day before and she said that my antibodies

r too high and its hashimotos disease ..i am sooo depressed and so is my family

...to make matters worse NHS does not seem to share the view and wants me to wait

5 more years ... thats what made me sad ...how could they not care ,i trusted

them with my health.

i am posting my lab results ,plz feel free to advice me on anything regarding

them .

My lab results r

TSH: 4.06 mIU/L

FT4: 13.4 pmol/L

FT3:4.4 pmol/L

thyroid peroxidase higher than 1300 U/ml normal range should less

than 60 U/ml

> Ansar,

>

> You were right to be shocked. You have high amounts of thyroid antibodies

which means you have Hashimotos disease, Th

ese antibodies attack the thyroid until it eventually gives up. The thyroid

struggles and has to be pushed more and more by way of increased Throid

stimulating hormone (TSH) just to produce enough thyroid hormones to keep you

running. You cannot get rid of the antibodies and they will attack your

thyroid.

[Guest guest]

>> i am posting my lab results ,plz feel free to advice me on anything regarding them .> > My lab results r> TSH: 4.06 mIU/L> FT4: 13.4 pmol/L> FT3:4.4 pmol/L> thyroid peroxidase higher than 1300 U/ml normal range should less> than 60 U/ml> Hi again Ansar,

I think its pretty clear you are hypothyroid.I got prescribed thyroxine on the NHS several years ago with almost identical blood test results.Not that it did any good,but thats another story...

However,new guidelines by the Royal Colleges have recently been published and they don't recommend treatment until the TSH rises above 10.Its outrageous.

I don,t want to push you further into despair,but I am not optimistic about your Endo/GP referring you to Dr Skinner.So don't be upset if they don't.He is widely known in Endocrinology circles and not for positive reasons unfortunately.

Anyway,if you don't get a referral to him there are other private doctors you can access so keep your chin up.There are lots of knowledgeable people here who can point you in the right direction.Most of us have been where you are and understand what you are going through.Any doctor that can leave you to suffer another 5 years shoudn't be practising in medicine.

Regards Peary

[Guest guest]

Ansar,

Your Lab results show you are clearly hypothyroid. But unfortunately

doctors in the UK are afraid to give you a diagnosis of hypothyroidism or start

you on treatment if your thyroid function tests are within the normal reference

range.

The problem is that Britain has the largest reference range in the world and

even though people can be very very ill, unable to work, or even walk, they can

never get their Thyroid Stimulating Hormone high enough to be diagnosed.

In America, their TSH ref. range is 0.3 to 3.0 - in Germany and Belgium, their

TSH ref. range is 0.3 to 2.5 and Sweden are adopting the same levels. In the

UK some docs often do not treat until the TSH is over 10.

What you need to do is to write to your GP

List your symptoms and signs (there is a check list in the files under

hypothyroidism)

List the members of your family who have a thyroid or autoimmune disease.

List your basal temperature taken before you get out of bed for 4 or 5 mornings.

List your test results and point out that your high anti body result shows you

have hashimotos disease.

Ask for other blood tests which you need, to see if any of them are low in the

reference range: these are ferritin, magnesium, vitamin B12, vitamin D3, folate,

magnesium, copper and zinc. Tell him that you are aware that if any of these are

very low, your thyroid hormone cannot be properly utilised by the cells.

I would also look up the name of the endocrinolgist you saw (on

http://www.drfoster.co.uk) and find out what he specialises in. If it's

diabetes and not thyroid disease I would point this out to the doctor and

request a referral to an endocrinologist of your choice. Sheila has a list of

endocrinologists who have a clue.. What area of the country are you in?

Tell the doctor that you wish your letter to be placed into your medical notes,

and send a copy to the Head of Practice in case the doctor decides to ignore it,

or throw it in the bin. (this really does happen).

If you get no where at all with this miserable doctor, then you can always

change doctors, You should read 'your thyroid and how to keep it healthy' by Dr

Barry Durrant-Peatfield and keep asking questions on this forum.

You really do have a problem, you do need a proper diagnosis, you are not

depressed and not imagining it. It's scary and probably best to have a doctor

on board, but the alternative is self treating, which many people do.

.

> i am posting my lab results ,plz feel free to advice me on anything regarding

them .

>

> My lab results r

> TSH: 4.06 mIU/L

> FT4: 13.4 pmol/L

> FT3:4.4 pmol/L

> thyroid peroxidase higher than 1300 U/ml normal range should less

> than 60 U/ml

>

>

[Guest guest]

Thanks Peary for ur reply,it's really helped me to understand that what i'm

feeling is because of being hypo

hopefully will get a refferal for Dr Skinner,if not i shall be looking for some

other doctor .

Take care

Ansar

[Ed]

> Hi again Ansar,

>

> I think its pretty clear you are hypothyroid.I got prescribed thyroxine

> on the NHS several years ago with almost identical blood test

> results.Not that it did any good,but thats another story...

>

> However,new guidelines by the Royal Colleges have recently been

> published and they don't recommend treatment until the TSH rises above

> 10.Its outrageous.

>

> I don,t want to push you further into despair,but I am not optimistic

> about your Endo/GP referring you to Dr Skinner.So don't be upset if

> they don't.He is widely known in Endocrinology circles and not for

> positive reasons unfortunately.

>

> Anyway,if you don't get a referral to him there are other private

> doctors you can access so keep your chin up.There are lots of

> knowledgeable people here who can point you in the right direction.Most

> of us have been where you are and understand what you are going

> through.Any doctor that can leave you to suffer another 5 years shoudn't be

practising in medicine.

>

> Regards Peary

>

[Guest guest]

Hello Ansar - This shows the absolutely parlous state we find

ourselves in when we learn of such supposedly NHS 'qualified'

endocrinologists who know so little about thyroid . Such endoprats are

actually causing their patients real bodily harm. I would write a letter to

your GP and send a copy to the Head of Practice, insisting that you have

absolutely no faith in the NHS if this is how such a 'specialist' treats those

patients with many of the symptoms and signs of hypothyroidism, a TSH of 4. 4.06

mIU/L plus thyroid peroxidase antibodies higher than 1300 U/ml . Tell your GP

that you disagree completely with his analysis that there is nothing wrong with

you and that you need to wait a further five years to see if you then might

have a thyroid problem and need to see a specialist in THYROID disease, rather

than one who specialises in diabetes (which if you check this endoprats details

in Google, you will probably find him to be a diabetic specialist). With such a

high level of antibodies, you are suffering with Hashimoto's disease. Tell your

GP you are no longer prepared to wait for five years without a proper diagnosis

and starting treatment for all those symptoms you are suffering and that you

want a trial of thyroid hormone replacement. Ask for your letter of request to

be placed into your medical notes, because if, at some time in the future, you

become more ill because you are being denied any form of treatment, the letter

will be there to show that you asked to be referred to a thyroid specialist and

not a diabetic specialist.

Hashimoto's disease, sometimes known as Hashimoto's thyroiditis,

autoimmune thyroiditis, or chronic lymphocytic thyroiditis, is an autoimmune

disease. Do you have any other members of your family who have an autoimmune

disease btw? In Hashimoto's, antibodies react against proteins in the thyroid

gland, causing gradual destruction of the gland itself, and making the gland

unable to produce the thyroid hormones the body needs. Hashimoto's typically

involves a slow but steady destruction of the gland that eventually results in

the thyroid's inability to produce sufficient thyroid hormone -- the condition

known as hypothyroidism. Along the way, however, there can be periods where the

thyroid sputters back to life, even causing temporary hyperthyroidism, then a

return to hypothyroidism.

This cycling back and forth between hypothyroidism and

hyperthyroidism is characteristic of Hashimoto's disease. So, for example,

periods of anxiety/insomnia/diarrhoea/weight loss may be followed by periods of

depression/fatigue/constipation/weight gain. In some cases, the onset of

Hashimoto's and elevation of antibodies will be accompanied by a variety of

symptoms, including anxiety, difficulty sleeping, fatigue, weight changes,

depression, hair loss, muscle/joint aches and pains, and fertility problems,

among others.

Unless

you have a goitre, most endocrinologists and conventional physicians will not treat

Hashimoto's disease, as diagnosed by elevated antibody levels, unless other

thyroid function tests such as TSH are outside the normal range - and this is

the problem with the very wide reference range for TSH. If you lived in America

where their TSH ref. range is 0.3 to 3.0 - with your TSH of 4.06, you would

have been started on thyroid hormone replacement. If you lived in Germany,

Belgium or Sweden with a TSH ref. range of 0.3 to 2.5. - you would have been

given a diagnosis and started on treatment, but in the UK, with the normal ref

range around 0.5 to 5.0, you are refused a diagnosis.

The

British Thyroid Association and the Royal College of Physicians state that NHS

doctors should NOT give a diagnosis if the TSH is within the range 0.5 to 10.0

- a range unmatched by any other country throughout the world. This is leaving

tens of thousands of people in the UK without the treatment that would make

them well. The BTA and RCOP have never backed up any of the statements by

citing references to the scientific evidence to show that they are right, yet

there is much research that shows they are wrong.

Having

said that, there are, however, some endocrinologists, as well as holistic doctors,

osteopaths and other practitioners, who believe that Hashimoto's disease -as

confirmed by the presence of high thyroid antibodies such as yours, who have

symptoms and signs, who believe this needs to be treated with thyroid hormone

replacement.

You

might have to fight for a diagnosis Ansar, but we will help where we can. Be

assured when doctors REALISE how determined you are, and that you are NOT going

to take their word that everything is fine and that you don't need treatment,

they will start to take note.

Luv -

Sheila

>

> I have thyroid peroxidase antibodies of more than 1300, i feel so tired

and its not a good feeling when u have two young kids ..the endo yesterday said

that we will have to wait and see ,ur thyroid mighyt get bad in 5 years ..i was

shocked because the way i feel now means i am sick...puffy face,tired muscles

,diffuse hairloss ,weight gain,joint pain .very painful periods & he wants

to wait another 5 years .Thankgod i have found this group because i really

needed to express my feelings to sumone.i want to go and see dr skinner but its

not possible till the end of july ..I feel so lonely with this disease as no

matter how hard i try i cant lose weight..its really bring my self esteem down

[Guest guest]

I should imagine if your GP speaks to such an endoprat who ha\s

refused you a diagnosis or any form of treatment, and who tells you to come

back in 5 years, is VERY unlikely to approve of your GP referring you to

somebody such as Dr Skinner. He would not want Dr Skinner to be giving you a

diagnosis and making you well when he is unable to. Your GP should be working

with his patient as the GMC demands, and give you the opportunity to see a

doctor who has done a great deal of research into thyroid disease and who has

made hundreds of patients who have been failed by the NHS well again. If your

GP refuses to refer you, write him a letter (keep copies of everything

yourself) asking him to write to you giving the exact reasons WHY he has

refused you such a referral. You need to get everything in writing - we can

then take it from there.

luv - Sheila

yes i want treatment soon ,have spoken to the GP & he asked why would i want

to see a dr skinner who does not belong to the area.i wanted to say because u

guys r not treating me and i want my health back .

he said he will speak with my endo,then he will give a referal.sound s like

they r in no hurry ..

[Guest guest]

Thanks Sheila ,i am so grateful for ur reply, will ask the GP for the reason if

he denies the referral to Dr Skinner & from now on everything in writing. yes

just found out the endo is diabetic specialist

i will write to ask why the endo thinks i have to wait even when i have such

severe symptoms.

thanks for ur help Shiela.

luv

Ansar

> Hashimoto's disease, sometimes known as Hashimoto's thyroiditis, autoimmune

> thyroiditis, or chronic lymphocytic thyroiditis, is an autoimmune disease.

> Do you have any other members of your family who have an autoimmune disease

> btw? In Hashimoto's, antibodies react against proteins in the thyroid gland,

> causing gradual destruction of the gland itself, and making the gland unable

> to produce the thyroid hormones the body needs. Hashimoto's typically

> involves a slow but steady destruction of the gland that eventually results

> in the thyroid's inability to produce sufficient thyroid hormone -- the

> condition known as hypothyroidism. Along the way, however, there can be

> periods where the thyroid sputters back to life, even causing temporary

> hyperthyroidism, then a return to hypothyroidism.

>

>

>

[Guest guest]

>

> Thanks Sheila ,i am so grateful for ur reply, will ask the GP for the reason

if he denies the referral to Dr Skinner & from now on everything in writing. yes

just found out the endo is diabetic specialist

> i will write to ask why the endo thinks i have to wait even when i have such

severe symptoms.

> thanks for ur help Shiela.

>

> luv

> Ansar

>

>

> > Hashimoto's disease, sometimes known as Hashimoto's thyroiditis, autoimmune

> > thyroiditis, or chronic lymphocytic thyroiditis, is an autoimmune disease.

> > Do you have any other members of your family who have an autoimmune disease

> > btw? In Hashimoto's, antibodies react against proteins in the thyroid gland,

> > causing gradual destruction of the gland itself, and making the gland unable

> > to produce the thyroid hormones the body needs. Hashimoto's typically

> > involves a slow but steady destruction of the gland that eventually results

> > in the thyroid's inability to produce sufficient thyroid hormone -- the

> > condition known as hypothyroidism. Along the way, however, there can be

> > periods where the thyroid sputters back to life, even causing temporary

> > hyperthyroidism, then a return to hypothyroidism.

yes my mum & sisters have it too