Re: Possible to get statistics/data on thyroid disease?

[Guest guest]

Jonnie I hope you manage to find such resources, as you say a paper on such

things would be a great proof for other treatments. I would bet my bottom dollar

that there are more anti ds to people on levo for a start.

lotsa luv

Dawnx

[Guest guest]

Hey

Jonny, how about you taking on this project. I too would like to know these

statistics, but am too busy doing other things. I wish there were more hours in

the day. This is a good project for a University student I think.

The only

statistics I have is to show how many prescriptions have been given during 2007

for synthetic T4, T3 and Armour Thyroid in the UK.

Armour Thyroid

USP 1500

T3

(Liothyronine/Cytomel/Tertroxin)

48100

T4(levothyroxine/Evotrox/Eltroxin)

18,736,400

According to the RCP

guideline they state that 1 in 4 people have thyroid function tests - which is

very strange when you think that Broda (and Dr Peatfield) believe 1 in 4

have a thyroid problem.

I am pretty

certain it would be found that those on levothyroxine used more prescription

drugs than those on Armour Thyroid because the T4-only monotherapy does not

fully resolve the patients’ symptoms. Hypothyroid patients chronically

used more prescription drugs, especially for diabetes, cardiovascular disease

and gastrointestinal conditions.(1) These are of great financial burden to the

NHS and an overwhelming burden to the quality of life of the tens of thousands

of hypothyroid sufferers in the UK alone.

(1) Lowe, . “Thyroid Hormone Replacement

Therapies: Ineffective and Harmful for Many Hypothyroid Patients.” May 4,

2004 http://www.drlowe.com/frf/t4replacement/intro.htm

Luv - Sheila

Im just wondering if there's any way to get statistics/data on the thyroid

disease? Things like the incidence of thyroid disease over the years and and

incidence in different countries? Im quite interested to see if certain

countries have lower or higher incidences of hypothyroidism than others.

Also, i thought that statistics/data on the prescriptions of those on

levothyroxine vs Armour may be interesting to see whether those on thyroixine

are taking more medication for other things such as high cholesterol, IBS, skin

conditions etc. (Implying that Armour is helping with these conditions too and

they they are due to under-treated hypothyroidism).

There's probably loads of other things that could be shown too that might prove

interesting/useful.

Thanks

Jonny

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18:03:00

[Guest guest]

Hi Jonny - in theory yes if it does come under FOI. Might be worth asking the PCTs in the first instance.

alternatively what about the prescriptions pricing authority? I think it will likely depend on whether they can in fact work this out but I tend to think it will only be available at patient level which means practices and that would be a long job to get that from them and there are thousands so try PPA and PCTs,

Gill

I asked Freedom of Information Requests people the following:Will I be able to get this information if I email practices and hospital trusts?

[Guest guest]

I asked Freedom of Information Requests people the following:

" I am looking for some data/statistics on hypothyroid patients and the

medications they get prescribed, and was told that you may be able to help.

Specifically, I am looking for:

- Out of those patients that take the thyroid medication levothyroxine, what

other medications do these patients take and how many patients take each one.

- Out of those patients that take the thyroid medication Armour Thyroid, what

other medications do these patients take and how many patients take each one.

eg. 12% of patients on levothyroxine also take fluoxetine. 7% of patients on

Armour Thyroid also take fluoxetine. "

Their reply:

" I am writing to advise you that following a search of our paper and electronic

records, I have established that the information you requested is not held by

the Authority.

We do not capture patient information relating to prescriptions. We believe

this information is only held locally by practices and Hospital trusts. "

Will I be able to get this information if I email practices and hospital trusts?

Thanks

Jonny

[Guest guest]

Thanks Gill,

I actually send this to the PPA who then forewarded it on to the FOI.

I could try PCTs then. Will I have to email each one individually or is there an

easier way?

thanks

Jonny

[Guest guest]

Hi Jonny, I dont know of an easier way though we do have, somewhere, a list of PCTs and email addresses, though this was for the public health folks I think. am I correct that you are a student Jonny? if so you will have access to Athens and you can get the Binleys Directory which I think will list the right bods in each PCT - though its probably not completely up to date. I guess you could do a round robin email to all of them?

Gill

I actually send this to the PPA who then forewarded it on to the FOI.I could try PCTs then. Will I have to email each one individually or is there an easier way?

[Guest guest]

All we do have on this is the number of prescriptions for

levothyroxine, liothyronine and natural thyroid extract that the NHS dish out

every year from the Prescription Pricing Authority.

For the year 2007 for instance:

In 2007,

The National Health Service prescribed: These are measured in thousands btw.

Armour

Thyroid USP

1.5

T3

(Liothyronine/Cytomel/Tertroxin) 48,000.1

T4(levothyroxine/Evotrox/Eltroxin)

18,736,000.4

Luv - Sheila

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of Gill

Sent: 11 May 2009 12:29

thyroid treatment

Subject: RE: Re: Possible to get

statistics/data on thyroid disease?

Hi

Jonny - in theory yes if it does come under FOI. Might be worth

asking the PCTs in the first instance.

alternatively

what about the prescriptions pricing authority? I think it will likely

depend on whether they can in fact work this out but I tend to think it will

only be available at patient level which means practices and that would be a

long job to get that from them and there are thousands so try PPA and PCTs,

Gill

I asked Freedom of Information Requests people

the following:

Will I be able to get this information if I email practices and hospital

trusts?

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07:02:00

[Guest guest]

You won't know

unless you try Jonny. I have the email addresses of all the UK Hospital Trusts

if you would like these. There are approx 162 - but the mail addresses may be a

bit out of date. Would you be able to get me an updated list Gill?

You can paste up to

25 email addresses in the Bcc of an Email and copy the letter of request and

send to each one of them. This is not too arduous a job. In the 'To' Box, you

simply write Undisclosed Recipient - so none of the other trusts know who else

you have sent the message to. Hope this helps. Wait until Gill tells me whether

she can send an up to date list of all of these email addresses first though,

and if she can't, then I will send the list to you privately.

luv - Sheila

We do not capture patient information relating to prescriptions. We believe

this information is only held locally by practices and Hospital trusts. "

Will I be able to get this information if I email practices and hospital

trusts?

Thanks

Jonny

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07:02:00

[Guest guest]

An updated list would be great..

Do you think the PCTs will give me such information? Is it under FOI, meaning

they have to give it to me?

Sheila, I dont understand your previous post - " All we do have on this is the

number of prescriptions for levothyroxine, liothyronine and natural thyroid

extract that the NHS dish out every year from the Prescription Pricing

Authority. "

Thanks

Jonny

[Guest guest]

Exactly what I say Jonny, the link I sent shows you the number

of NHS prescriptions being given out for those particular thyroid hormone

replacements. This shows the number of people being treated in 2007 for

hypothyroidism - but it doesn't show you whether they were doing the patient

good or not or whether they were needing to take different prescriptions for

symptoms that weren't going away.

Luv - Sheila

Sheila, I dont understand your previous post - " All we do have on this is

the number of prescriptions for levothyroxine, liothyronine and natural thyroid

extract that the NHS dish out every year from the Prescription Pricing

Authority. "

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07:02:00

[Guest guest]

Oh sorry I read it wrong..I thought you said " all we have to do on this is.. "

but you actually said " All we do have on this is... "

lol

Thanks

Jonny

[Guest guest]

Hey Gill,

Would it be possible for you to find that list of PCT emails? i cant find the

binleys directory on my uni internet thing.

Thanks

Jonny

[Guest guest]

Hi Jonny - you are not going to find out unless you ask

*grin*.

Luv - Sheila

Right I just found list of PCTs with email addresses.

http://www.networks.nhs.uk/189

Do you think they are likely to give the information I want?

[Guest guest]

My mistake I thought it had email addresses but I was mistaken.

Jonny

[Guest guest]

It turns out that Bham cancelled their subscription to the Binleys Directory

last year. There is however a hardcopy of the 2008 version in the library. i

could use that, but it may take a while typing them out by hand rather than copy

& pasting.

Jonny

[Guest guest]

Iv just email all of the PCTs, so Ill post back on here once I get a reply.

jonny

[Guest guest]

Just got a reply from one of the hospital trusts:

" I can confirm that the Trust holds information that falls within the

description specified in your request.

However, the Trust has estimated that it will cost more than the appropriate

limit to consider your request. The appropriate limit as specified in the

Regulations is set at £450. This represents the estimated cost of one person

spending 2.5 working days in determining whether the Trust holds the information

and locating, retrieving and extracting the information. Under section 12 of the

Freedom of Information Act 2000 the Trust is not obliged to comply with your

request and we will not be processing your individual request further

The reason for the use of this exemption is that, we do not hold a central

record of hypothyroid patients and the medications they take. Each patient's

details are recorded in individual case notes. Therefore to complete your

request would require a manual review of all patient notes.

For your information, it may be possible for you to gather this information from

GP's directly. It is our understanding that each GP surgery would keep an

electronic database of diagnosis and medications. This may make tracing the

information you require much easier and importantly within the appropriate

limits.

If you wish to narrow the scope of your request, we would be happy to

investigate for you. Please note any reformulated request the Trust receives

will be treated as a fresh FOI request. "

Do you think that the PCTs will have the data soted electronically, making it

easy to retrieve? I can not imagine sending an email to every GP surgery! lol

Thanks

Jonny

[Guest guest]

Jonny - because so much is going on in this forum, can you

repost a copy of your original  request to them, as it is difficult to remember

with all the posts. I cannot believe that such information is not automatically

collected electronically. Surely this must be a requirement.  What is 'Section

12 of the Freedom of Information Act, that stops the Trust complying with such

a request? Who DOES hold a central record of hypothyroid patients.  I just

don't believe what they have written, but they are obviously hoping you will

believe this and drop the case.

Repost your original and we will see if it can be

" narrowed " . You could write to one (say your own) local PCT putting

the request to them as a 'trial' and see what they say Jonny.

Luv - Sheila

Just got a reply from one of the hospital trusts:

" I can confirm that the Trust holds information that falls within the

description specified in your request.

However, the Trust has estimated that it will cost more than the appropriate

limit to consider your request. The appropriate limit as specified in the

Regulations is set at £450. This represents the estimated cost of one person

spending 2.5 working days in determining whether the Trust holds the

information and locating, retrieving and extracting the information. Under

section 12 of the Freedom of Information Act 2000 the Trust is not obliged to

comply with your request and we will not be processing your individual request

further

The reason for the use of this exemption is that, we do not hold a central

record of hypothyroid patients and the medications they take. Each patient's

details are recorded in individual case notes. Therefore to complete your

request would require a manual review of all patient notes.

For your information, it may be possible for you to gather this information

from GP's directly. It is our understanding that each GP surgery would keep an

electronic database of diagnosis and medications. This may make tracing the

information you require much easier and importantly within the appropriate

limits.

If you wish to narrow the scope of your request, we would be happy to

investigate for you. Please note any reformulated request the Trust receives

will be treated as a fresh FOI request. "

Do you think that the PCTs will have the data soted electronically, making it

easy to retrieve? I can not imagine sending an email to every GP surgery! lol

Thanks

Jonny

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17:55:00

[Guest guest]

My original message to them was:

" I am looking for some data/statistics on hypothyroid patients and the

medications they get prescribed, and was told that you may be able to help.

Specifically, I am looking for:

- Out of those patients that take the thyroid medication levothyroxine, what

other medications do these patients take and how many patients take each one.

- Out of those patients that take the thyroid medication Armour Thyroid, what

other medications do these patients take and how many patients take each one.

eg. 12% of patients on levothyroxine also take fluoxetine. 7% of patients on

Armour Thyroid also take fluoxetine. "

In Section 1 it states:

(1) Any person making a request for information to a public authority is

entitled—

(a) to be informed in writing by the public authority whether it holds

information of the description specified in the request, and

( if that is the case, to have that information communicated to him.

And in section 12 it states:

(1) Section 1(1) does not oblige a public authority to comply with a request for

information if the authority estimates that the cost of complying with the

request would exceed the appropriate limit.

(2) Subsection (1) does not exempt the public authority from its obligation to

comply with paragraph (a) of section 1(1) unless the estimated cost of complying

with that paragraph alone would exceed the appropriate limit.

(3) In subsections (1) and (2) " the appropriate limit " means such amount as may

be prescribed, and different amounts may be prescribed in relation to different

cases.

So it seems they what they say is correct.

Who could I contact to ask who does hold central records for hypothyroidism?

I think that is a good idea about email one PCT so Ill do this now

Thanks

Jonny

[Guest guest]

I have recieved some more replies, all from different trusts. Iv posted them here as I think they all give interested points:reply 1:"I have discussed your request with the Chief Pharmacist and would be grateful if you could clarify some points.1. You have not specified a time period for the group of patients you want us to identify. Can you be precise about the scope of your phrase "out of those patients".2. When you say "what other medications" it would be helpful to have clarification on two grounds: (a) do you want all other medications identified or only those that might be prescribed in respect of their hypothyroid condition? ( we can only realistically try to identify medication that has been prescribed and supplied by the Trust to such patients; what is prescribed by GPs will not be on our pharmacy system, and whether patients actually take their medication is different again."I guess as Armour is rarely prescribed, the larger the time span the better. But, as is mentioned in another reply from another trust, the larger the time span, the higher the cost and more time it will take them, so they may then be exempt from having to provide the information.Would it be better to just look at those medication that will be more commonly prescribed ie. anti-depressants, statins etc? Again, if the list of meds is less, it will cost them less.I guess we want those that have been prescribed by GPs too as most thyroid meds will have been?reply 2:"Further to your request for information, I write to advise that the PCT do not hold this information. You would need to contact individual GP's to request this information."I guess this rules out asking PCTs for the information? I think Ill still email my local one for a second opinion tho.Reply 3:"Having asked our pharmacy and our information systems colleagues, unfortunately this information is not kept centrally. It is also not stored on the pharmacy computer systems. Therefore we would have to pull each and every set of patient notes of those patients taking the drugs you refer to to see what other medications they were taking and how many were taking each one. Unfortunately this would be prohibitive on cost grounds - ie the time it would take to examine each individual set of notes, compile a chart with the information, and supply it to you i n the form you request would exceed the limits set out in the Freedom of Information Act (£450)(Section 9 and 12 of the Act). As you have not provided a timescale we cannot estimate what we would have to charge you to provide the information. I am sorry we are unable to help you with your request"I have actually been told this same thing by more than one trust. This one have said about a charge tho rather than just that they're not going to deal with the request. I think they can decide if they want to drop it or apply a charge if it will cost them more than £450 to do.ThanksJonny

[Guest guest]

HiSome information that may be of use to you.Dr s http://www.drfosterintelligence.co.uk/ - Health Intelligence databasethe upcoming development of electronic perscription systems under the Connected for Health project - there are various areas in which electronic perscription systems are being trialed - http://www.connectingforhealth.nhs.uk/systemsandservices/eps - this would certainly suggest that there are instances in which data is easily available electronicallyI work for a Respiratory Health Campaigning Charity and I know that we work with a group that compiles respiratory health data from various organisations and PCT's - see http://www.laia.ac.uk/ as an example. It is possible that similar organisations exist within endocrine health. Whether you would be able to access it is another thing - I will be going into the office tomorrow and will ask our Policy Team where the best places are to get health data, GP list, SHA (England - different bodies exist in the nations) and PCT listsHave you considered contacting one of the larger Teaching hospitals to ask where they get their dataIt is possible to download address lists from websites into simple databases that can then provide you with mailing lists.Hope that helpsBridged

[Guest guest]

Thanks Bridged, * Dr s http://www.drfosterintelligence.co.uk/ - HealthIntelligence databaseI think I will email the dr foster website and ask them if they hold such information.* the upcoming development of electronic perscription systems underthe Connected for Health project - there are various areas in whichelectronic perscription systems are being trialed -http://www.connectingforhealth.nhs.uk/systemsandservices/eps - thiswould certainly suggest that there are instances in which data is easilyavailable electronicallyI feel that because the EPS are new, there wont be sufficient data on

those being prescribed Armour as it is so rare that Armour is

prescribed.* I work for a Respiratory Health Campaigning Charity and I know thatwe work with a group that compiles respiratory health data from variousorganisations and PCT's - see http://www.laia.ac.uk/ as an example. Itis possible that similar organisations exist within endocrine health. Whether you would be able to access it is another thing - I will begoing into the office tomorrow and will ask our Policy Team where thebest places are to get health data, GP list, SHA (England - differentbodies exist in the nations) and PCT listsSuch an agency for thyroid disease would be great to find. I have done

a search but cannot find any such ones. Could you think of any other

names they wold go by rather than just "thyroid information agency" or

"endocrine information agency" as this is what I have searched for?

I appreciate you going to the effort of finding that information out, it will hopefully prove to be very helpful. Thanks!* Have you considered contacting one of the larger Teaching hospitalsto ask where they get their dataSome of the hospital trusts that I have emailed were teaching hospitals. These have yet to reply so I will see what they say.* It is possible to download address lists from websites into simpledatabases that can then provide you with mailing lists.I don't understand what you mean by this last point. Please could you clarify?ThanksJonny

[Guest guest]

Hi Jonny

Would the World Health Organisation (WHO) hold such information.

You could give them a try. I know all this information has to be collected and

sent to a central office, and it could be WHO. Can anybody help here please.

Luv - Sheila

In Section 1 it states:

(1) Any person making a request for information to a public authority is

entitled—

(a) to be informed in writing by the public authority whether it holds

information of the description specified in the request, and

( if that is the case, to have that information communicated to him.

And in section 12 it states:

(1) Section 1(1) does not oblige a public authority to comply with a request

for information if the authority estimates that the cost of complying with the

request would exceed the appropriate limit.

(2) Subsection (1) does not exempt the public authority from its obligation to

comply with paragraph (a) of section 1(1) unless the estimated cost of

complying with that paragraph alone would exceed the appropriate limit.

(3) In subsections (1) and (2) " the appropriate limit " means such

amount as may be prescribed, and different amounts may be prescribed in

relation to different cases.

So it seems they what they say is correct.

Who could I contact to ask who does hold central records for hypothyroidism?

I think that is a good idea about email one PCT so Ill do this now

Thanks

Jonny

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found in this incoming message.

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Version: 8.0.238 / Virus Database: 270.12.32/2119 - Release Date: 05/18/09

17:55:00

[Guest guest]

I guess you should stick with 'other medications' such as

antidepressants or statins - as these are often prescribed to those with

hypothyroidism Jonny. If you go back to the information we have about how many

prescriptions in the UK for levothyroxine, liothyronine and Armour Thyroid were

given out in 2007 - that is a starting point. We know there were 1500

prescriptions for Armour for that year against huge numbers for T4 and lesser

numbers of T3. Perhaps a good year would be 2007. What a PCT CAN do is to

send out requests to all GP's (they would send one request to each of the GP's

surgeries in their particular area, and then collect the information you

require that way. Talk to them about this.

I know that I sent information out to every GP in the country

through all the PCT's who sent out the copy of the letter I sent to each

surgery. I do have a list of all the Email addresses of all the doctors in Haringey

and all of those in Glasgow City and surrounding area if these would help.

Luv - Sheila

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of jrshannie

Sent: 19 May 2009 11:45

thyroid treatment

Subject: Re: Possible to get statistics/data on

thyroid disease?

I have recieved some more replies, all from different trusts. Iv posted them

here as I think they all give interested points:

reply 1:

" I have discussed your request with the Chief Pharmacist and would be

grateful if you could clarify some points.

1. You have not specified a time period for the group of patients you want us

to identify. Can you be precise about the scope of your phrase " out of

those patients " .

2. When you say " what other medications " it would be helpful to have

clarification on two grounds:

(a) do you want all other medications identified or only those

that might be prescribed in respect of

their hypothyroid condition?

( we can only realistically try to identify medication that has

been prescribed and supplied by the Trust to such patients; what is prescribed

by GPs will not be on our pharmacy system, and whether patients actually take

their medication is different again. "

[Guest guest]

I have sent requests to my local PCT (Birmingham) and one to Hampshire PCT as

has the most patients in the country, meaning more people taking Armour and also

this should be the most expensive for them to look throught the records meaning

any other PCT will cost less.

Sheila, I don't see how those figures for 2007 help us.

I was also thinking, is Armour more prescribed in the USA? and if so, maybe it

would be worth asking them for data?

Thanks

Jonny