Re: Complaining about non-diagnosis

[Guest guest]

You should not write to The British Thyroid Association Helen,

they are mainly the cause of our problem, you need to complain ABOUT the BTA or

your specific GP - as I am not sure that you can report a 'group' to the GMC. First,

what you need to do is to get your husband's Medical Notes. See http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68 & subcategoryid=160

.. No doctor can withhold any information that is in your medical notes under

The Data Protection Act 1998. You need all the thyroid function blood test

results particularly, together with the reference range. Once you get those,

post them on the forum and we will help with their interpretation, but no doubt

all that was tested during that time before he was started with treatment was

probably TSH only. - which tells a doctor absolutely nothing. However, find out

first how much it would cost to get access to his medical notes and we can take

it from there. You will have to put in a formal request in writing to your GP.

ME, FM, CFS are symptoms of hypothyroidism, all three of which

can mainly be treated successfully with the active thyroid hormone T3. These

diseases never existed before the manufacture of levothyroxine or before

thyroid function tests were introduced. Everybody who was hypothyroid was

treated with natural thyroid extract before these came in, and they were

treated safely and successfully. It was ONLY when TFT came in and T4-only was

used to treat everybody, that many patients started to suffer with many more

symptoms than they had before, and because they were taking T4 and their

thyroid function tests were within the so called 'normal' reference range,

doctors told their patients it was not possible their thyroid was the cause of

the problem - so decided to call these symptoms FM, ME or CFS (we call these

dustbin diagnosis) - or they would blame their patient for having 'functional

somatoform disorder' meaning - it's all in their head!

Luv - Sheila

Hi all.

I'm considering complaining about the fact that my husband went six years

thinking that he had M.E./C.F.S, in very poor health, when it now appears that

he was hypothyroid all along. He developed thyroid nodules in 2008 (which must

have been growing for some time, they were externally visible by this stage)

and had half his thyroid removed, although no cancer was detected. He was

repeatedly told that his thyroid levels were 'normal' and that he didn't need

treatment. Finally, a few months ago, his doctor decided he was actually hypo

and started him on levothyroxine - it's still a work in progress, but at 100mg,

he's really feeling the improvement, and it's a transformation!

I don't know what his test results were, all this time, but I'd like to request

them. If his TSH has all along been above the 2.5/ 3 considered top of the

range in many other countries, then I think we should write to the British

Thyroid Association and voice our protest against their much higher recommended

level.

We should also let his doctors and thyroid consultant know what they missed, so

as to educate them.

(The high TSH range also affects me, as mine is currently over 4, and with low

free T4, but getting no treatment, and trying to fix myself without my doctor's

help - currently working on my adrenal strength and iron levels, considering

NDT in the near future.)

Before I begin this tedious task, does anyone have any tips?

cheers,

x Helen

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[Guest guest]

Cost? Oh dear. I thought we just asked for them and would be given printouts. Is

it not that simple?

> find out first how much it would cost to get

> access to his medical notes and we can take it from there. You will have to

> put in a formal request in writing to your GP.

[Guest guest]

Hi Helen Definitely complain - the more people that complain and keep following it through the higher the chances they will eventually have to listen to us.I would suggest that you complain to the GP/NHS first and they will let you know their complaints policy, you might want to get in touch with PALS who can help you with making a complaint. Do expect this to take ages and ages - there are time limits they have to abide by and they are in months not

weeks! Don't let them fob you off!I'm in the process of a complaint myself and it is a long and tiresome process which feels more like banging your head against a brick wall, but it might be worth it in the end.After all if we don't complain how will they know there is a problem?Good luck!Dawn M From: Helen

<helen@...> thyroid treatment Sent: Wednesday, 11 January 2012, 13:07 Subject: Complaining about non-diagnosis

Hi all.

I'm considering complaining about the fact that my husband went six years thinking that he had M.E./C.F.S, in very poor health, when it now appears that he was hypothyroid all along. He developed thyroid nodules in 2008 (which must have been growing for some time, they were externally visible by this stage) and had half his thyroid removed, although no cancer was detected. He was repeatedly told that his thyroid levels were 'normal' and that he didn't need treatment. Finally, a few months ago, his doctor decided he was actually hypo and started him on levothyroxine - it's still a work in progress, but at 100mg, he's really feeling the improvement, and it's a transformation!

I don't know what his test results were, all this time, but I'd like to request them. If his TSH has all along been above the 2.5/ 3 considered top of the range in many other countries, then I think we should write to the British Thyroid Association and voice our protest against their much higher recommended level.

We should also let his doctors and thyroid consultant know what they missed, so as to educate them.

(The high TSH range also affects me, as mine is currently over 4, and with low free T4, but getting no treatment, and trying to fix myself without my doctor's help - currently working on my adrenal strength and iron levels, considering NDT in the near future.)

Before I begin this tedious task, does anyone have any tips?

cheers,

x Helen

[Guest guest]

Check out the complaints procedure in our FILES section. I think

this is under 'Information for Patient's Folder'.

Luv - Sheil

Definitely complain

- the more people that complain and keep following it through the higher the

chances they will eventually have to listen to us.

I would

suggest that you complain to the GP/NHS first and they will let you know their

complaints policy, you might want to get in touch with PALS who can help you

with making a complaint. Do expect this to take ages and ages - there are time

limits they have to abide by and they are in months not weeks!

Hi all.

I'm considering complaining about the fact that my husband went six years

thinking that he had M.E./C.F.S, in very poor health, when it now appears that

he was hypothyroid all along. He developed thyroid nodules in 2008 (which must

have been growing for some time, they were externally visible by this stage)

and had half his thyroid removed, although no cancer was detected. He was

repeatedly told that his thyroid levels were 'normal' and that he didn't need

treatment. Finally, a few months ago, his doctor decided he was actually hypo

and started him on levothyroxine - it's still a work in progress, but at 100mg,

he's really feeling the improvement, and it's a transformation!

[Guest guest]

Many doctors will give you your blood test results free of

charge - but if you want to see all your medical notes, they are allowed to

charge - but some might now. Write a note to your GP asking for all the thyroid

function tests your husband has had together with the reference range. Tell

him/her you will be happy to pick up a copy of these at reception when it is

convenient and ask the GP to let you know when these would be ready. Again,

always ask for any letters that you write to your doctor to be placed into the

medical notes.

Luv - Sheila

Cost? Oh dear. I thought we just asked for them

and would be given printouts. Is it not that simple?

> find out first how much it would cost to get

> access to his medical notes and we can take it from there. You will have

to

> put in a formal request in writing to your GP.

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[Guest guest]

I think the maximum they can charge you is £10, there is an upper limit and its

not much. Its for the time taken to find and scan/copy the papers you have

requested.

2

> > find out first how much it would cost to get

> > access to his medical notes and we can take it from there. You will have to

> > put in a formal request in writing to your GP.

>

[Guest guest]

Thanks Sheila, I'll dig it out. x

>

> Check out the complaints procedure in our FILES section. I think this is under

'Information for Patient's Folder'.

[Guest guest]

My GP was happy to give me my thyroid test results and I'd be surprised if they

charged you for this. But even if they charge you for the printouts it would

only be a few pounds as they charge per sheet (the receptionist at your surgery

can tell you this but I'd ask nicely for them before even mentioning cost - let

them suggest that!)

When I requested copies of my complete notes it cost me £50.00 for

photocopies/printouts of all them that is the maximum they can charge. You can

also just go and look at your notes which is usually £10 (I think).

Please don't be put off, we need people to complain and many sufferers simply

can't do it for a variety of reasons!

Dawn M

>

> Cost? Oh dear. I thought we just asked for them and would be given printouts.

Is it not that simple?

>

[Guest guest]

Is that all? Depending on your age, it might cost them a great deal more than

that to photocophy all your notes, never mind the time involved. Does that

include photocopying the old fashioned notes, before everything was

computerised?

Miriam

> When I requested copies of my complete notes it cost me £50.00 for

photocopies/printouts of all them that is the maximum they can charge.

[Guest guest]

I have in the past requested and paid for all of my notes/blood results/x-rays

scans etc from two different hospitals and believe me after 19 ops and being

hospitalised quite a lot they are like a war and peace novel.

One hospital even gave me a cd which contained the images from a full body bone

scan that I had.

The maximum they can charge is £50 and for dentists it is about £25.

They make for an interesting read, especially some of the comments that they put

in that I was not aware of.

Dawn

[Guest guest]

Wow-£50 is a lot to pay to get the results of your tests! When my GPs surgery wouldnt give me my blood results I phoned the Department of Health and was told by a lovely young man to quote such and such and that they could only charge a max of £10. It costs the same (£10) to have a print out of one blood test as it does for a condensed history of thelast 12-13 years on about 10 double sided pages - but it included the results and ranges of all blood tests. £10 for one result is just too much! I would have refused to pay £50 - that is extortionate when you only want your notes/results. Dont know about copying the old paper notes - would they even consider that?

I was told that GP surgeries are now becoming a business - and making a lot of money too!

Colleen

From: miriam_hinch <miriam_hinch@...>thyroid treatment Sent: Thursday, 12 January 2012, 9:06Subject: Re: Complaining about non-diagnosis

Is that all? Depending on your age, it might cost them a great deal more than that to photocophy all your notes, never mind the time involved. Does that include photocopying the old fashioned notes, before everything was computerised?Miriam> When I requested copies of my complete notes it cost me £50.00 for photocopies/printouts of all them that is the

[Guest guest]

No, that's not to get test results, but to get a copy of your health records.

That could be 70 years' worth of notes, or more.

Miriam

> Wow-£50 is a lot to pay to get the results of your tests!Â>

[Guest guest]

Maximum is £50, which is pretty good considering all those years

of consultations, blood tests, reports, etc. However, you can always go to the

surgery yourself and ask for them to be put into a room where you can read

through them. This is what my surgery does, though as yet, I have not had the

occasion to take this up, but I was told that if I ever wanted to inspect my

medical notes, this could be easily arranged. They have a little 'cubby hole'

with a desk, chair and writing paper so you can make notes.  This might be best

for you Helen.

Luv - sheila

> > find out first how much it would cost to get

> > access to his medical notes and we can take it from there. You will

have to

> > put in a formal request in writing to your GP.

>

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[Guest guest]

Oh, that's a good idea! Although, only if they'll let me accompany my husband to

see his notes, because he would probably be too boggled at what to look for.

I'll ask them.

Thanks Sheila.

Xx

>

> Maximum is £50, which is pretty good considering all those years of

> consultations, blood tests, reports, etc. However, you can always go to the

> surgery yourself and ask for them to be put into a room where you can read

> through them.

[Guest guest]

Colleen, £50 is for a copy of the whole of your medical notes -

everything - not just copies of blood tests. Blood test results would be

included in that £50.

Luv - Sheila

Wow-£50 is a lot to pay to get the results of your tests!

When my GPs surgery wouldnt give me my blood results I phoned the Department of

Health and was told by a lovely young man to quote such and such and that they

could only charge a max of £10. It costs the same (£10) to have a

print out of one blood test as it does for a condensed history of thelast 12-13

years on about 10 double sided pages - but it included the results and ranges

of all blood tests. £10 for one result is just too

much! I would have refused to pay £50 - that

is extortionate when you only want your notes/results. Dont know

about copying the old paper notes - would they even consider

that?

[Guest guest]

Evening all; Another thing you can do if you get access to read your notes is

to take your phone or digital camera and take a pic of each page, then just

upload to your own computer..

Regards

Jane

> > > find out first how much it would cost to get

> > > access to his medical notes and we can take it from there. You will have

> to

> > > put in a formal request in writing to your GP.

> >

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

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>

[Guest guest]

What do you do when your doctors tell you that they don't have the notes from

your last practice? (I wonder if the results from the last practice show

elevated TSH?) Me, paranoid??? Not half.

Are the notes sent on, or are they stored elsewhere?

I think a call to PALS may be in order.

Regards

2

>

> Maximum is £50, which is pretty good considering all those years of

> consultations, blood tests, reports, etc. However, you can always go to the

> surgery yourself and ask for them to be put into a room where you can read

> through them.

[Guest guest]

> I have in the past requested and paid for all of my notes/blood results/x-rays

scans etc from two different hospitals.

I would just like to let you know that these were hospital not doctors

notes.There was one lady who rang me from a hospital to ask what dates I

wanted.When I said I wanted everything including my observation notes from time

spent on the wards she was not too happy as it was going to take her a long time

to photocopy those that were not on the computer. It must have taken her hours.

£50 well spent when you see what they write about you thinking that you will

never get to read it......

Dawn

[Guest guest]

Wow - what had they said about you? I'm always curious as to whether

'hypochondriac' is written in my notes, either in code or straight out!

£50 well spent when you see what they write about you thinking that you will

never get to read it......

>

> Dawn

[Guest guest]

Good idea, I could take my camera in if we do it this way - would have to hope

they offer us a reading place with good light, though.

>

> Evening all; Another thing you can do if you get access to read your notes is

to take your phone or digital camera and take a pic of each page, then just

upload to your own computer..

>

> Regards

> Jane

[Guest guest]

I'm just drafting a letter to request my husband's thyroid test results back to

2008. (It will be signed by him, of course - I'm just the secretary! )

The only thing that worries me, about asking for a copy to be placed in his

notes, is that they'll take this as a threat of some sort. Is it likely to make

them more non-cooperative, at all?

I see the point of doing it, of course - since we're planning to make a

complaint, we do want every step of the process to be on record. I just wonder

if it will make them less helpful in trying to deal with our hypothyroid issues,

get referrals, persuade them to prescribe unusual things like T3, etc etc.

>

> always ask for any letters that you write to your doctor to be placed into

> the medical notes.

>

> Luv - Sheila

[Guest guest]

On Sun, 15 Jan 2012 20:17:27 -0000, you wrote:

>

>The only thing that worries me, about asking for a copy to be placed in his

notes, is that they'll take this as a threat of some sort. Is it likely to make

them more non-cooperative, at all?

This might be the time to change Dr anyway, if they are not competent

then why stay with them???

Nick

[Guest guest]

My official doctor at least had the wit to tell me that my T4 was low and my TSH

high, even though they are 'within range'. Unlike another doctor at the same

practice, who last week told me that my ferritin level is normal, when it's 18

on a scale of 13 to 150. To him, anything 'in range' is considered 'normal' -

i.e., he's an idiot. But he increased my husband's levothyroxine dose and said

he'd have started him on it much sooner, which was why I thought I'd try seeing

him. Oh well. I'll go back to my own doctor and see if I can't get her on board.

We've only lived here for 3 years, and before that my husband lived in a few

places over the prior few years, so he has seen quite a number of doctors; plus

the consultant/s at Homerton hospital, which is where he had his thyroid nodules

dealt with. It won't be simple to make a complaint but I think we should alert

as many of them as possible to the fact that they missed a fairly obvious

diagnosis in favour of the pointless 'CFS' that he was lumbered with.

>

> >

> >The only thing that worries me, about asking for a copy to be placed in his

notes, is that they'll take this as a threat of some sort. Is it likely to make

them more non-cooperative, at all?

>

> This might be the time to change Dr anyway, if they are not competent

> then why stay with them???

>

> Nick

>

[Guest guest]

Is it more important for him to keep friends with his doctor

than to get back his normal health? The trouble with us patients is that we are

too scared of upsetting our doctor so we let then get away with murder. If you

really believe that a doctor would become even less cooperative with him than he

is now, then surely, this is telling you that it is about time you changed your

GP and find one who cares about his patients. Write to your local Primary Care

Trust, tell them you have lost complete faith in your present GP and would they

find you another. You have nothing to lose, and probably everything to gain.

Luv - sheila

>

>The only thing that worries me, about asking for a copy to be placed in his

notes, is that they'll take this as a threat of some sort. Is it likely to make

them more non-cooperative, at all?

[Guest guest]

If they become less helpful after asking for the letter to be

placed into his medical notes, you need to take a note of this to add to your

evidence in bringing about your complaint.

Luv - sheila

I'm just drafting a letter to request my

husband's thyroid test results back to 2008. (It will be signed by him, of

course - I'm just the secretary! )

The only thing that worries me, about asking for a copy to be placed in his

notes, is that they'll take this as a threat of some sort. Is it likely to make

them more non-cooperative, at all?

I see the point of doing it, of course - since we're planning to make a

complaint, we do want every step of the process to be on record. I just wonder

if it will make them less helpful in trying to deal with our hypothyroid

issues, get referrals, persuade them to prescribe unusual things like T3, etc

etc.

>

> always ask for any letters that you write to your doctor to be placed into

> the medical notes.

>

> Luv - Sheila

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