Re: Is this legal?

July 18, 2011

Count me in, it happened twice recently !

Would it be possible to run a survey to discover how many members have had their doctor's requests for specific blood tests ignored?

July 18, 2011

Unfortunately there is no facility to run a poll on this group but there is on the chat group.

And it has happened to me several times not just for thyroid.

Lilian

Would it be possible to run a survey to discover how many members have had their doctor's requests for specific blood tests ignored?

July 18, 2011

Hi All

It happened to me too recently. My GP had requested the thyroid antibodies test alongside the usual TSH and T4 tests (she refused to test for T3). When I got my results printed off, the lab had written on them that they hadn't tested for antibodies as "the patient seems to be doing fine on current medication"!!!!!

Quite bizarre - how do they have any idea HOW I'm doing! In actual fact, my FT4 was very high (out of range) and my GP subsequently lowered my dosage of thyroxine and declared that this was the cause of my continuing symptoms!

Because my GP has agreed to refer me to an endo, I've let it go......for now!

Gill x

> Would it be possible to run a survey to discover how many members have had their doctor's requests for specific blood tests ignored?>

July 19, 2011

If you have Hashimoto's disease, this is an autoimmune disease.

If you have antibodies to your thyroid, you could also have other organ

specific antibodies too so the laboratory has, as far as I am aware, no right

to refuse such a test. However, if you have previously been tested and found to

have thyroid antibodies, there is no need to keep testing. Antibodies will

always be present until they have destroyed the specific organ they don't like

i.e. the thyroid gland. In such a case, laboratories will refuse to test again.

If antibodies are present, and these have been detected, a doctor should know

that it is pretty useless trying to titrate your thyroid hormone replacement

through TSH and free T4. Such results are likely to be flawed. This is

because at any time of testing, the thyroid antibodies could be dormant and

other times very active, and your TFT's would be affected accordingly.

Luv - Sheila

Hi All

It happened to me too

recently. My GP had requested the thyroid antibodies test alongside

the usual TSH and T4 tests (she refused to test for T3). When I got my

results printed off, the lab had written on them that they hadn't tested

for antibodies as " the patient seems to be doing fine on current

medication " !!!!!

Quite bizarre - how do they

have any idea HOW I'm doing! In actual fact, my FT4 was very high (out of

range) and my GP subsequently lowered my dosage of thyroxine and declared that

this was the cause of my continuing symptoms!

Because my GP has

agreed to refer me to an endo, I've let it go......for now!

Gill x

> Would it be possible to run a survey to discover how many members have

had their doctor's requests for specific blood tests ignored?

>

July 19, 2011

Hi

I asked my GP for my iron to be tested. I was told that the last test was fine.

I understand from that that my iron levels do not change then! I am eating a lot

less red meat and trying to eat a less acidic diet.

I also asked for D3 to be tested when I visited the endo. The lab refused to do

it saying that my previous test about 10 years earlier was 'normal'. So there we

go. I believe that we are getting ill due to a lack of vitamins and minerals

that our food no longer contains due to farming methods and pesticides etc.

The NHS can afford these expensiv £32.27 loaves on prescription for coeliacs but

obviously not blood tests! I am trying to eliminate gluten and just do without

bread. One can live without it - at least at that price! Just how much money

are these NHS admin. people throwing down the drain?

Margaret

>

> Count me in, it happened twice recently !

>

> >

> > Would it be possible to run a survey to discover how many members have had

their doctor's requests for specific blood tests ignored?

> >

>

July 19, 2011

I blame the doctors for allowing laboratory staff to dictate to

them. Doctors should be getting on the telephone and demanding that these tests

be done. laboratory staff are not qualified to decide what you do and do not

need, they do not see you, neither have they examined you or know anything

about your medical history. Get your doctor to fight your case, and THEIR case

for asking for the particular tests in the first place.

All that is needed for evil to survive is that good men do

nothing (or something like that)

Luv - Sheila

Hi

It is bad enough fighting with our doctor but it seems that many of us are

finding ourselves fighting the NHS blood testing labs too.

What right do these labs have to ignore the directions of the doctor and ignore

any tests they do not think are necessary?

Are we talking about technicians who feel they are more knowledgeable than the

doctors?

Is this legal?

Are they better qualified than doctors to make these decision?

Is this a breach of our human rights?

Would it be possible to run a survey to discover how many members have had

their doctor's requests for specific blood tests ignored?

July 19, 2011

If you can remind me at a later date, we will set such a survey

up once we are fully aware of which specific tests hospital laboratories are

refusing to test. I have far too much going on at the moment after the Mail on

Sunday article. BTW - if anybody did not see the article because you don't buy

this paper, please go to our web site www.tpa-uk.org.uk

and click on 'The Great Thyroid Scandal' under the TPA News column on the right

hand side of the Home Page.

Luv - Sheila

Count me in, it happened twice

recently !

Would it be possible to run a survey to discover how many members have had

their doctor's requests for specific blood tests ignored?

July 19, 2011

This would be done as an official Petition or Survey Lilian,

like our Survey to create our Register of Counterexamples to T4-only therapy.

This register, at the moment, shows that 1177 sufferers still suffered symptoms

of hypothyroidism when taking T4-only therapy, but whose symptoms were

mitigated or disappeared once they started a 3 hormone containing product,

either synthetic or natural.

Luv - Sheila

Unfortunately there is no facility to run a poll on this group

but there is on the chat group.

And it has happened to me several times not just for thyroid.

Lilian

Would it be possible to run a survey to discover how many members have had

their doctor's requests for specific blood tests ignored?

July 19, 2011

This

is absolutely LUDICROUS! I would need to see something in writing from both my

GP and the head of this particular laboratory as to the reasons WHY they are

refusing these specific tests, and I would demand that both your GP and Head of

the Laboratory back up their responses by citing references to the medical

research/studies showing their reasoning is correct.

Iron

levels are changing all the times depending on what the patient is suffering. Print

off the following information and enclose with a short letter to both of them.

This document shows just some of the references to the connection between low

levels of specific minerals and vitamins that affect the thyroid function.

Low

iron/ferritin:

Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase

reverse T3 levels, and block the thermogenic (metabolism boosting) properties

of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron

saturation below 25 or a ferritin below 70, will result in diminished

intracellular T3 levels. Additionally, T4 should not be considered adequate

thyroid replacement if iron deficiency is present (1-4)).

1. Dillman E, Gale C, Green

W, et al. Hypothermia in iron deficiency due to altered triiodithyroidine

metabolism. Regulatory, Integrative and Comparative Physiology

1980;239(5):377-R381.

2. SM, PE,

Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient

rats: effect of dietary fat. Life Sci 1993;53(8):603-9.

3. Zimmermann MB, Köhrle J.

The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism:

Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78.

4. Beard J, tobin B, Green

W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J.

Nutr. 1989;119:772-778.

Low vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403

Low vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329

and http://www.goodhormonehealth.com/VitaminD.pdf

Low magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf

Low folate: http://www.clinchem.org/cgi/content/full/47/9/1738

and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163

Low copper http://www.ithyroid.com/copper.htm

http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm

http://www.ithyroid.com/copper.htm

http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf

http://ajplegacy.physiology.org/content/171/3/652.extract

Low zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf

and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html

Luv - Sheila

I asked my GP for my iron to be tested. I was told that the last test was fine.

I understand from that that my iron levels do not change then! I am eating a

lot less red meat and trying to eat a less acidic diet.

I also asked for D3 to be tested when I visited the endo. The lab refused to do

it saying that my previous test about 10 years earlier was 'normal'. So there

we go. I believe that we are getting ill due to a lack of vitamins and minerals

that our food no longer contains due to farming methods and pesticides etc.

July 19, 2011

My GP said she couldn't get my mineral levels tested unless she could justify

the need to test them, such as if I had a malabsorption disease.

Miriam

>

> I also asked for D3 to be tested when I visited the endo. The lab refused to

do it saying that my previous test about 10 years earlier was 'normal'. So there

we go. I believe that we are getting ill due to a lack of vitamins and minerals

that our food no longer contains due to farming methods and pesticides etc.

July 19, 2011

This is happening a lot in Coventry.

I complained last year and was told they would not test FT4 and FT3 if TSH is

within range. That was no help to me whose TSH had always been in range, but

whose T4 and T3 were both too low. They also said that Vitamin D was so safe

they would only test annually, leading to a delay in treating me for a serious

deficiency.

On the last occasion FT3 was not tested, despite being specifically asked for

and as I am on T3 only, this meant my endo had no test results to go on at my

last appointment.

My letter of complaint has been posted this morning!

I expect to be flannelled and intend to take this further.

D

>

> What right do these labs have to ignore the directions of the doctor and

> ignore any tests they do not think are necessary?

>

July 19, 2011

......and how would the GP know without testing?

> My GP said she couldn't get my mineral levels tested unless she could justify

the need to test them, such as if I had a malabsorption disease.

>

> Miriam

July 19, 2011

I would have said that the lab techs don't have any rights to dictate what tests

need to be done. My endo gets right on the phone if they don't do the tests he

asks for!!

> I blame the doctors for allowing laboratory staff to dictate to them.

> Doctors should be getting on the telephone and demanding that these tests be

> done. laboratory staff are not qualified to decide what you do and do not

> need,

July 19, 2011

The other classic Coventry lab response was when my doc asked for various

mineral deficiencies to be tested for (the ones like zinc, copper etc that are

recommended on this board). The lab refused to do them and the slip came back

marked 'not clinically justified'. I'll say no more in case I completely lose it

Susie x

>

> This is happening a lot in Coventry.

>

> I complained last year and was told they would not test FT4 and FT3 if TSH is

within range. That was no help to me whose TSH had always been in range, but

whose T4 and T3 were both too low. They also said that Vitamin D was so safe

they would only test annually, leading to a delay in treating me for a serious

deficiency.

>

> On the last occasion FT3 was not tested, despite being specifically asked for

and as I am on T3 only, this meant my endo had no test results to go on at my

last appointment.

>

> My letter of complaint has been posted this morning!

>

> I expect to be flannelled and intend to take this further.

>

> D

>

> >

> > What right do these labs have to ignore the directions of the doctor and

> > ignore any tests they do not think are necessary?

> >

>

July 19, 2011

Hi

Think we have opened a huge can of worms here!

I feel so helpless knowing that I really need to start with the basics - blood

tests for the various vitamins and minerals advised on here. I know however

that I will be met with a refusal so how can I get myself sorted? I have had

very little to do with the NHS over my 63 years but now that I do need it I find

it lets me down. It is so frustrating because I know what I need but not how to

get it. What is the point of increasing T4 or T3 when perhaps I am lacking

iron, D3 etc.? All a waste of time eh?

When I did have a full panel of tests ordered by the endo (this is when they

didn't do the D3 as it was OK several years earlier) I was told that they were

all in NORMAL range of course but some were on the low side when I checked on

here. It is all pointless and I am just looking forward to starting on the St

s Wort to avoid slitting my wrists!

Margaret

>

> Hi

>

> It is bad enough fighting with our doctor but it seems that many of us are

finding ourselves fighting the NHS blood testing labs too.

>

July 19, 2011

Hi Sheila,

Thank you for the information. However, I have never during the past 12 years been tested for thyroid antibodies, so I have no idea if I have Hashimotos or not. Back when I was initially diagnosed I was never told what was actually causing my thyroid to be underactive, I was just told to take the thyroxine and all would be well. I didn't have internet access at that time, and to be honest I trusted my doctor, so didn't think to question anything.

I am seeing Dr M at Huddersfield next month, and I'm hoping that he will carry out all the tests that my GP hasn't been able to do.

Gill x

> If you have Hashimoto's disease, this is an autoimmune disease. If you have> antibodies to your thyroid, you could also have other organ specific> antibodies too so the laboratory has, as far as I am aware, no right to> refuse such a test. However, if you have previously been tested and found to> have thyroid antibodies, there is no need to keep testing.

> Luv - Sheila

July 20, 2011

Hi Margaret

The

way to go about sorting this problem is to do what I recommended in an earlier

response to your problem.

You

need to write to your GP and the particular laboratory in question and get something

in writing from both of them asking them to let you know in writing the

reasons WHY they are refusing these specific tests and ask both of them to cite

references to show their reasons are correct.

I

would copy all the tests you need (see below) and cite the references against

each one to show them WHY you need these tested now. These specific vitamins

and minerals, if found to be low in the reference range, affect the functioning

of the greater thyroid system and can stop the thyroid hormone from getting

into the cells so you continue to suffer until whatever is found to be low has

been supplemented. Doctors and patients MUST work together according to the

General Medical Council - your doctor must listen to you.

Low

iron/ferritin: Iron deficiency is shown to significantly reduce T4 to T3 conversion,

increase reverse T3 levels, and block the thermogenic (metabolism boosting)

properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an

iron saturation below 25 or a ferritin below 70, will result in diminished

intracellular T3 levels. Additionally, T4 should not be considered adequate

thyroid replacement if iron deficiency is present (1-4)).

1.

Dillman E, Gale C, Green W, et al. Hypothermia in iron deficiency due to

altered triiodithyroidine metabolism. Regulatory, Integrative and Comparative

Physiology 1980;239(5):377-R381.

2.

SM, PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination

in iron-deficient rats: effect of dietary fat. Life Sci 1993;53(8):603-9.

3.

Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine

and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid

2002;12(10): 867-78.

4.

Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in

Iron-Deficient Anemic Rats. J. Nutr. 1989;119:772-778.

Low

vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403

Low

vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329

and http://www.goodhormonehealth.com/VitaminD.pdf

Low

magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf

Low

folate: http://www.clinchem.org/cgi/content/full/47/9/1738

and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163

Low

copper http://www.ithyroid.com/copper.htm

http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm

http://www.ithyroid.com/copper.htm

http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf

http://ajplegacy.physiology.org/content/171/3/652.extract

Low

zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf

and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html

Luv -

Sheila

Think we have opened a huge can of worms here!

I feel so helpless knowing that I really need to start with the basics - blood

tests for the various vitamins and minerals advised on here. I know however

that I will be met with a refusal so how can I get myself sorted? I have had

very little to do with the NHS over my 63 years but now that I do need it I

find it lets me down. It is so frustrating because I know what I need but not

how to get it. What is the point of increasing T4 or T3 when perhaps I am

lacking iron, D3 etc.? All a waste of time eh?

When I did have a full panel of tests ordered by the endo (this is when they

didn't do the D3 as it was OK several years earlier) I was told that they were

all in NORMAL range of course but some were on the low side when I checked on

here. It is all pointless and I am just looking forward to starting on the St

s Wort to avoid slitting my wrists!

July 20, 2011

Well I have been checked for malabsorption by a gastro-enterologist, so

officially there is no problem there.

Miriam

> .....and how would the GP know without testing?

>

> > My GP said she couldn't get my mineral levels tested unless she could

justify the need to test them, such as if I had a malabsorption disease.

July 20, 2011

We need to be able to convince GPs that these mineral deficiencies affect the

utilisation of thyroid hormone. Do we have any suitable scientific papers to

print off and take in?

Miriam

>

> The other classic Coventry lab response was when my doc asked for various

mineral deficiencies to be tested for (the ones like zinc, copper etc that are

recommended on this board). The lab refused to do them and the slip came back

marked 'not clinically justified'. I'll say no more in case I completely lose it

July 21, 2011

How would she know unless she tests your levels?

Luv - Sheila

My GP said she couldn't get my mineral levels

tested unless she could justify the need to test them, such as if I had a

malabsorption disease.

Miriam

>

> I also asked for D3 to be tested when I visited the endo. The lab refused

to do it saying that my previous test about 10 years earlier was 'normal'. So

there we go. I believe that we are getting ill due to a lack of vitamins and

minerals that our food no longer contains due to farming methods and pesticides

etc.

July 21, 2011