RE: Having a great start to the week.... again.... endoprat

[Guest guest]

,

oh pathetic.... was she a thyroid expert or a diabetes specialist having a go?

Did you check her out on Drfosterhealth.com? Always worth knowing because you

can say something along the lines of looks, it's thyroid not diabetes and be

really patronising.... won't get you anywhere but you will feel better

So you're on NT and still have symptoms? What are they? Is everything else

up to scratch, particularly iron, folate B12 and D3....? Do you know they're

ok or are you hoping? If you've not had them tested they may be stopping the

meds from working.

I stopped eating gluten before Christmas and have recently had to lower my

meds,(I have hashimotos), I have been checked for coeliac disease and don't

have it, but the gluten is still a problem. Seems this is common with thyroid

problems..... according to a book I'm reading.....

Loads of stuff you can try.... one of 'em will be the problem.... It's just

finding it....

X

>

> Hi all,

>

> I seem to be having bad Mondays recently and wanted to tell you about this

morning's experience! About 4 weeks ago I saw my GP to discuss my latest thyroid

results. After I had one bad experience with an endo about a year ago, my GP

said that he was happy to monitor me himself. I am on NDT. Now the GP suddenly

changed his mind because my TSH is 0.01 and my ft3 was slightly over the range

and my ft4 at the low end. So He wanted me to see another endo. I wanted to see

an endo down in London but was denied this (but that's another story in its own

right).

>

> Anyway, this morning I went to see the NHS endo he referred me to. I didn't

have any expectations whatsoever. I believed I'd just go there and talk about my

labs a bit and that's it. When the Dr turned out to be a young woman I was ever

so pleased.

> I told her I was on T4+T3 (didn't tell her about the NDT) and still had

persisting hypo symptoms. She told me I had to come off the T3 because it is not

standard practice to prescribe it. Off to good start...

> I said: " But I still feel better than on T4 alone. "

> She said: " Well you still have symptoms, so obviously this is not working,

either. "

> Anyway, the woman was very belligerent and humiliating, for some reason she

must have thought I was attacking her and questioning her authority, when all I

said to her was that I do not like to go back to T4 alone because it means I

will feel so bad I won't even be able to get out of bed. I said to her: " I can

see this isn't going anywhere " , grabbed my bag and got up to leave. She said we

should find a compromise... Not sure if she doesn't understand the concept of

compromise, because she just wanted to enforce her views on me. She kept saying

that there is no scientific evidence for the benefits of T3. I told her that

there are lots of studies proving this. She said that if you take all the

studies together, they show that there is no benefit. I guess by the time you

are reading this, you are ready to bang your head agains the wall, right? But it

gets better!

>

> I said to her: " Well how can you exclude that I do not have a conversion

problem or a rt3 problem?? " Reply: " That only happens in the rarest of cases and

the tests for that would be really extensive. If I put you on T4 only we will

see if you have a conversion problem. " Aha.... At this point, I am contemplating

murder. I said to her: " So according to your plan, how long do you want me to

try this for? I can tell you exactly it won't work and I don't have any more

time to waste because I am doing a PhD and I am unable to concentrate because of

the brain fog. " She said: " Well take the T4 for 6 weeks, have a blood test and

if you have a TSH between 2-4, at the upper end, we can add another 25mcg. " :-|

>

> I was just speechless after that. I know this is turning into a long post, the

story was actually a bit longer, with her being deliberately patronising. When I

asked her about rt3 she said: " Do you mean [insert really, really long word I

had never ever come accross]? " and she did this deliberately because she

obviously had to prove a point.

>

> Anyway, if this whole story wasn't so sad, I am sure it would actually sound

quite funny. It is just utterly dissappointing and demoralizing and after the

first endoprat I encountered, I didn't think it could get worse. That woman must

have NHS guidelines on her bedside table...

> So today is the day I bid farewell to the NHS... I will get a referral to Dr

Skinner from my GP on Wednesday. That's if he gives one...

>

> (from Birmingham)

>

[Guest guest]

Hi ,Thanks for your reply! > oh pathetic.... was she a thyroid expert or a diabetes specialist having a go? Did you check her out on Drfosterhealth.com? I looked her up, but she is not on there... But from googling her I found out that she indeed specialises in thyroid dysfunction, particularly thyroid cancer and nodules. Apparently she also "works as an MRC Clinician Scientist at the University of Birmingham and was awarded the Young Clinical Endocrinologist Lectureship by the Society for Endocrinology and is a regular speaker at national and international meetings. She heads her own research group and has a rapidly growing publication list of peer-reviewed papers". She seems to be quite ambitious, shame that she has been brainwashed by NHS guidelines.> So you're on NT and still have symptoms? What are they? Is everything else up to scratch, particularly iron, folate B12 and D3....? Do you know they're ok or are you hoping? If you've not had them tested they may be stopping the meds from working.Yes, I am on NDT, but my GP thinks I am on T4+T3. I take 5 NDT daily, plus 3 NAX, Vit D3, B12, Folate. B12 and Folate were tested about a year ago, Folate was at the low end (B12 405 (ref 144-950), Folate 2.50 (ref 2.4 – 14)

). My TSH was 0.01 and my FT4 was at the low end and FT3 above the range (do not have the exact values at the moment). I haven't been tested for any of the other usual suspects because GP denied me these tests. Over in the RT3 forum Nick urged to get iron labs and I have actually since found out that iron deficiency runs in my family, both my mom, sister and aunt have some sort of hereditary iron storing dysfunction and supplement iron. I am seeing another GP tomorrow so I will ask if I can get this checked. Initially, the NDT was a big improvement over the T4 only, but the effect has worn down now and I feel almost as bad as before. The worst sympton I still have is the brain fog. I feel like I have literally dumbed down; I can't remember the simplest things, cannot concentrate, have a fuzzy feeling in my head as soon as I try to concentrate. I am a PhD student, so I rely on my brain on a daily basis. Everything I do is just 10 times harder than before; I finished a journal article the other day and after that I couldn't get out of bed for three days (well, I forced myself, but it was difficult). The other bad symptom is the exhaustion/tiredness. I am constantly tired. Last year, when I just started NDT I had more energy, started running and took part in some 5k and 10k races. I have noticed that for a few months now I get exhausted and breathless very quickly when exercising. The other persistent symptom is the weight gain. But there are also things that have improved loads since NDT and haven't got much worse yet: swelling of face, hands and feet, burning soles of feet. > I stopped eating gluten before Christmas and have recently had to lower my meds,(I have hashimotos), I have been checked for coeliac disease and don't have it, but the gluten is still a problem. Seems this is common with thyroid problems..... according to a book I'm reading.....I also have hashi. I was checked twice for coeliacs disease, but tests came back negative. I did however go on a candida diet for a few months last year and I felt great on it; lost 4kg and had loads of energy. I also bought a lot of gluten free foods while I was on that diet. I don't follow a strict candida diet anymore, but I eat healthily and do watch my sugar intake and avoid carbs wherever I can. I have put the weight that I lost back on and the pounds keep creeping up. In total, since the start of my thyroid problems I have put on 10kg and feel awful for it. While I felt good on the candida diet, I find it impossible to do follow it strictly forever. I don't eat rice, potatoes, bread, or pasta. I sometimes eat quinoa instead. It is sad enough to have to exclude these foods from your diet, because I used to love them, but it is even more frustrating, when

you don't eat them but you still put on weight! How mean! Tomorrow I am seeing my GP and I hope I will get the referral to Dr Skinner. Fingers crossed. xx

[Guest guest]

Hi ,

Just wanted to chime in on the gluten free diet.....

I'm reading the same book as , I guess, (Why do I still have thyroid sumptoms when my Lab tests are normal, by Datis Kharrazian – well worth reading btw) and one of the major points Kharrazian makes is that he has established a link between gluten and Hashimoto's. He differentiates between a `gluten intolerance' and testing positive for Celiac disease. Apparently one does not have to have Celiac disease to have a reaction to gluten - having thyroid autoantibodies is enough . The point he is making is (quote) -

Numerous studies have shown a link between gluten intolerance and Hashimoto's, If you have the disease, eat a gluten-free diet, avoiding wheat and wheat-like grains such as barley, rye, spelt, triticale, kamut and oats. The gluten molecule is very similar to the thyroid gland molecule, which confuses the overzealous immune system in a gluten-intolerant person.

He says that if a person with a gluten intolerance or celiac disease regularly eats guten, her immune system is kept on a constant red alert, toiling virtually non-stop... and this would keep the autoantibody count high (mine is). This happens because every time undigested gluten mistakenly slips into the bloodstream (via leaky gut, which is a problem area for people suffering from systemic Candida as well as for people with gluten intolerance) the immune system responds by destroying it for removal....- I read all of this with dismay, as I am already suffering from Candida and am lactose intolerant in addition, and the effects of Candida are very similar to those of a person with Celiac, only Celiacs have to avoid gluten and Candida sufferers have to avoid sugar. I have tested positive for Candida and negative for Celiac disease, but reading Kharrazian has made me think.... it would explain my bowel problems, which I had always attributed to having slipped up on the sugar front. But thinking about it, much of what contains sugar, also contains gluten, i.e. cakes, bread etc. - So perhaps the sometimes violent reactions I am getting are less caused by sugar, but by gluten ??? – which would make some sort of sense, because I react violently when I eat cake or something containing lactose (milk, for instance) but the "gut reaction" is less violent when I consume something sugary-only. Sugar gives me more muscle and joint pain .... I am planning to experiment now with gluten free foods.... the thought fills me with horror, because having looked at the list of what contains gluten, and cutting out dairy and sugar too, there is hardly anything left for me to eat L --- but I want to give this a try just to see if it calms down my gut.

Love,

xx

[Guest guest]

I am on NDT. Now the GP suddenly changed his

mind because my TSH is 0.01 and my ft3 was slightly over the range and my ft4

at the low end. So He wanted me to see another endo. I wanted to see an endo

down in London but was denied this (but that's another story in its own right).

Did you take your natural desiccated thyroid on the morning you

had your blood drawn ? If so, that would be the reason your free T3 was

over the top of the reference range. You should not take any for 24 hours

before the test because T3 peaks in the blood a between 2 to 4 hours after

taking it and this scares doctors to death and they react by immediately

telling you that you are taking too much and will get atrial fibrillation

and/or osteoporosis.

I would be interested to know why you were denied a referral to

a London Endocrinologist .

Anyway, this morning I went to see the NHS endo

he referred me to. I didn't have any expectations whatsoever. I believed I'd

just go there and talk about my labs a bit and that's it. When the Dr turned

out to be a young woman I was ever so pleased.

I told her I was on T4+T3 (didn't tell her about the NDT) and still had

persisting hypo symptoms. She told me I had to come off the T3 because it is

not standard practice to prescribe it. Off to good start...

I said: " But I still feel better than on T4 alone. "

She said: " Well you still have symptoms, so obviously this is not working,

either. "

Didn't she even hint that your dose might need titrating or you

may have one of the many associated conditions going along with your symptoms

of hypothyroidism which could be stopping the thyroid hormone from being

properly utilised at the cellular level?

Anyway, the woman was very belligerent and

humiliating, for some reason she must have thought I was attacking her and questioning

her authority, when all I said to her was that I do not like to go back to T4

alone because it means I will feel so bad I won't even be able to get out of

bed. I said to her: " I can see this isn't going anywhere " , grabbed my

bag and got up to leave. She said we should find a compromise... Not sure if

she doesn't understand the concept of compromise, because she just wanted to

enforce her views on me. She kept saying that there is no scientific evidence

for the benefits of T3. I told her that there are lots of studies proving this.

She said that if you take all the studies together, they show that there is no

benefit. I guess by the time you are reading this, you are ready to bang your

head agains the wall, right? But it gets better!

It depends upon which studies she was reading - and I reckon

from what she has said, these are the flawed studies. You need to copy out Dr

Lowe's critique of these studies, ask her to read them and then discuss

this matter further with you. As they say, there is none so blind that will not

see (or something like that). Everybody who is battling with a doctor who hangs

his hat on these studies and refuses to prescribe any form of T3 for you should

also copy this critique for your doctor, and make sure s/he gives you the

courtesy of at least reading through it http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm

I said to her: " Well how can you exclude

that I do not have a conversion problem or a rt3 problem?? " Reply:

" That only happens in the rarest of cases and the tests for that would be

really extensive. If I put you on T4 only we will see if you have a conversion

problem. " Aha.... At this point, I am contemplating murder. I said to her:

" So according to your plan, how long do you want me to try this for? I can

tell you exactly it won't work and I don't have any more time to waste because

I am doing a PhD and I am unable to concentrate because of the brain fog. "

She said: " Well take the T4 for 6 weeks, have a blood test and if you have

a TSH between 2-4, at the upper end, we can add another 25mcg. " :-|

Oh - run a MILE and as fas as you can. You will NEVER

regain your health with this idiot.

I was just speechless after that. I know this

is turning into a long post, the story was actually a bit longer, with her

being deliberately patronising. When I asked her about rt3 she said: " Do

you mean [insert really, really long word I had never ever come accross]? "

and she did this deliberately because she obviously had to prove a point.

Did

she say " Reverse Triiodothyronine " or something else. " Yes,

doctor, you obviously know the correct word for T3, but do you actually know

what rT3 is " . I would be tempted to write her a short note and tell her rT3,

unlike T3, doesn't stimulate thyroid hormone receptors. rT3 binds to

these receptors thereby blocking the action of the active thyroid hormone T3.

Under stress conditions, the adrenals produce excess amounts of cortisol.

Cortisol inhibits the conversion of the mainly inactive T4 to the active T3,

thus shunting T4 conversion from T3 towards rT3. As a consequence, there is a

widespread shutdown in T3 binding right across the body. This condition is

termed rT3 dominance, or if she wants her fancy words, Reverse Triiodothyronine

Dominance. This can cause reduced body temperature, which slows the action of

many enzymes, leading to a clinical syndrome called multiple enzyme

dysfunction, which produces the same effects seen in hypothyroidism. Effects

include fatigue, headache, migraine, PMS, irritability, fluid retention,

anxiety and panic.

Anyway, if this whole story wasn't so sad, I am sure it would actually sound

quite funny. It is just utterly dissappointing and demoralizing and after the

first endoprat I encountered, I didn't think it could get worse. That woman

must have NHS guidelines on her bedside table...

So today is the day I bid farewell to the NHS... I will get a referral to Dr

Skinner from my GP on Wednesday. That's if he gives one...

Let

us know what happens today , and good luck.

This

may well be the first day of your new and wonderful life.

Luv

- Sheila

(from Birmingham)

[Guest guest]

….so what, sounds good, but then, so does Professor Jayne

lyn and she is President of the British Thyroid Association, and we all

know how responsible this organisation is for causing such distress, heart-ache

and suffering for those who have symptoms of hypothyroidism, which they

ignore. She, and all her committee know exactly what they are doing wrong and

the reasons why there are over a quarter of a million sufferers in the UK alone

who are being left without the thyroid hormone replacement that will make them

well, but for reasons best known to themselves (probably financial) they are

not prepared to do anything about it. They are quite appalling, and they really

do NOT care about us, however much they pretend they are the experts and we are

all wrong.

Luv - Sheila

Thanks for your reply!

> oh pathetic.... was she a thyroid expert or a diabetes specialist having a

go? Did you check her out on Drfosterhealth.com?

I looked her up, but she is not on there... But from googling her I found out

that she indeed specialises in thyroid dysfunction, particularly thyroid cancer

and nodules. Apparently she also " works as an MRC Clinician

Scientist at the University of Birmingham and was awarded the Young Clinical

Endocrinologist Lectureship by the Society for Endocrinology and is a regular

speaker at national and international meetings. She heads her own research

group and has a rapidly growing publication list of peer-reviewed papers " .

She seems to be quite ambitious, shame that she has been brainwashed by NHS

guidelines.

_,_._,___

[Guest guest]

She works at the QE hospital and her husband is head of endo department. They

are both a waste of time, I have seen them both - arrogant inflexible - spiteful

- belittling.

Suggest you go on the 'Health choices' and slate the service I got an e-mail

from the chief exec of a hospital for that!!

Glynis

> is President of the British Thyroid Association, and we all know how

> responsible this organisation is for causing such distress, heart-ache and

> suffering >

I looked her up, but she is not on there... But from googling her I found

> out that she indeed specialises in thyroid dysfunction, particularly thyroid

> cancer and nodules.

[Guest guest]

Not sure how the subject has got on to this pair of idiots, but if you email

Tess, she has been dealt with by both of them for a long time and is in a

frightful state right now.

.

>

> She works at the QE hospital and her husband is head of endo department. They

are both a waste of time, I have seen them both - arrogant inflexible - spiteful

- belittling.

[Guest guest]

MODERATED TO REMOVE PREVIOUS MESSAGES ALREADY READ. PLEASE CHECK THAT YOU HAVE

DONE THIS BEFORE CLICKING SEND. LUV - SHEILA

________________________

Good to know that you agree on her, so it's not just me! I probably should go on

to health choices but I am totally lacking energy at the moment... I got an

appointment with Dr Skinner now, I really hope he can help...

>

> She works at the QE hospital and her husband is head of endo department. They

are both a waste of time, I have seen them both - arrogant inflexible - spiteful

- belittling.

> Suggest you go on the 'Health choices' and slate the service I got an e-mail

from the chief exec of a hospital for that!!

> Glynis

[Guest guest]

Hi Sheila.

> Did you take your natural desiccated thyroid on the morning you had

your

> blood drawn ? If so, that would be the reason your free T3 was

over

> the top of the reference range.

No, I didn't take it on the morning but I did take a dose in the late

afternoon the day before. Not sure how this has influenced that result,

but I have given another sample on Wednesday and the results should be

in soon...

> I would be interested to know why you were denied a referral to a

London

> Endocrinologist .

My GP said that he wasn't allowed to refer me to an endo that wasn't

local. He said that when he referred me to Dr N. (who wasn't local),

that was an exception, but since the regulations have changed, blah

blah. He also said he can't refer me to a spefic Dr at the hospital. I

have since found out that none of this was true, but I think that GP is

'fed up' with me refusing to take the antidepressants he think are the

simple solution to all my problems! Sigh...

> Didn't she even hint that your dose might need titrating or you may

have one

> of the many associated conditions going along with your symptoms of

> hypothyroidism which could be stopping the thyroid hormone from being

> properly utilised at the cellular level?

Yes, I asked her that, she said she could offer me a synacthen test in

about 11 week's time... At that point the conversation was already going

into one clear direction, so I just saved my breath on telling her that

I was well aware that this would only show extreme levels of adrenal

insufficiency and I didn' t bother asking for a test of zinc, magnesium,

ferritin, etc...

> Oh - run a MILE and as fas as you can. You will NEVER regain

your

> health with this idiot.

I know! I felt like being stuck in a nightmare! In hindsight, compared

to her, the first endoprat was a dream... Trust me, I will never see

this woman again... I just feel sorry for all the other people she

mistreats...

> Did she say " Reverse Triiodothyronine " or something else. " Yes,

doctor, you

> obviously know the correct word for T3, but do you actually know what

rT3

> is " .

No, it wasn't that simple. I have since found out what she said. She

said " triiodothyronine 5 deiodinase " , i.e. the enzyme that helps convert

T4 to T3 but I am probably not telling you anything new here... So

basically she was just rephrasing my question, deliberately trying to

make me feel insecure! Why else would she have rephrased the question in

such a way? Well, she achieved her desired effect anyway, because I was

startled and just said " I don't know " ...

> Let us know what happens today , and good luck.

>

> This may well be the first day of your new and wonderful life.

>

> Luv - Sheila

Thanks! I have just booked my appointment with Dr Skinner! I can't

remember if I said this before (brain fog...) but I saw another GP my

usual practice last week and she instantly said that coming of the T3 is

probably the worst option in my case. She literally said: " Well your

problem is fatigue and brain fog... What good is T4 only gonna do you?

You have tried that for years, anyway... " I just wanted to hug that

woman! She also agreed to have zinc, ferritin, etc, tested and wrote

me the referral to Dr Skinner there and then So far, things are

finally looking up. Now I just have to keep my fingers crossed that Dr

Skinner can help, but I have heard only good things about him so far!

xx

[Guest guest]

Hi Glynis

Dr S. helped me incredibly, I do hope you find the same.

I got to such a state of misdiagnosis at my surgery is was appalling - including

being referred for CBT counselling as my hair was falling out (stress)- slow

digestive system was irritable bowel syndrome - intermittent high blood pressure

was nothing to do with hypothyroidism. I now understand that lack of thyroxine

causes the blood to divert to core organs to keep them going -result - high

blood pressure.

After seeing Dr. S. my health has been restored so that I am able to now work 4

days a week and go to university and study for a counselling diploma, which I

couldn't do before without burning out most weeks and being unable to function.

I am proud to say that I went back to the one doctor I found to have reasonable

people skills (this was after I had forced referral to Dr. S on another GP in

the practice who gave me a choice of 3 endo's to go to - all with specialist

interests in diabetes - to which I said no way) and told him I was shocked about

consistent mis-diagnosis and the fact that the cost of my misdiagnosis was

culpable! How much does a course of CBT counselling cost - 10 sessions one to

one? My slow digestive system would have probably ended up with hospital

referrals for cameras etc. to find out nothing was wrong! What is the cost of

that? It is hardly suprising that they label us depressed and too lazy to

exercise - they are looking for answers in the wrong place. I told him all this

very calmly and rationally. He replied - do you feel we have let you down? I

said - absolutely - he said I will never let you down again. Result!!!

Shame we can't calcuate the cost of being treated correctly versus the cost of

misdiagnosis. I wonder if this would be possible? I am sure we would be shocked

at how much the NHS is wasting by poor quality thyroid care. It would make

interesting reading. I have a vision of an on-line database where we all log in

and calculate the cost person by person..adding up to a huge total no doubt!

That would get to the crux of the matter - we might get people listening to us

then - money talks in this age of austerity!

Hope your visit to Birmingham proves successful Glynis.

Regards

Lynne

- I got an appointment with Dr Skinner now, I really hope he can help...

>

>

>

> >

> > She works at the QE hospital and her husband is head of endo department.

They are both a waste of time, I have seen them both - arrogant inflexible -

spiteful - belittling.

> > Suggest you go on the 'Health choices' and slate the service I got an e-mail

from the chief exec of a hospital for that!!

> > Glynis

>

[Guest guest]

Its the lack of applied logic that drives me nuts!! I asked my endo 'Why do I

need TSH when my thyroid was killed by RAI 10 years ago?' Of course he declines

to answer, changes the subject or otherwise ignores the question.

Evidence based medicine? Thats a laugh, bias based medicine is more like it!!

I wish I could afford to go private, I wish I couls afford to self treat.

I get really fed up with the blackmail, intimidation and threats because I won't

toe the line.

Stuff 'em though, its my life and I'll fight to protect the quality of life I

have any way I can and if that means going to the GMC, civil rights or the

european court of human rights, then I'll do it. I don't want to be a test

case, just want the health professionals to support me, include me and treat me

with respect, is that too much to ask?

Glynis

> Dr S. helped me incredibly, I do hope you find the same.

> Shame we can't calcuate the cost of being treated correctly versus the cost of

misdiagnosis. I wonder if this would be possible? I am sure we would be shocked

at how much the NHS is wasting by poor quality thyroid care. It would make

interesting reading. I have a vision of an on-line database where we all log in

and calculate the cost person by person..adding up to a huge total no doubt!

That would get to the crux of the matter - we might get people listening to us

then - money talks in this age of austerity!

>

> Hope your visit to Birmingham proves successful Glynis.

>

> Regards

>

> Lynne

>

>

>

> - I got an appointment with Dr Skinner now, I really hope he can help...

> >

> >

> >

> > >

> > > She works at the QE hospital and her husband is head of endo department.

They are both a waste of time, I have seen them both - arrogant inflexible -

spiteful - belittling.

> > > Suggest you go on the 'Health choices' and slate the service I got an

e-mail from the chief exec of a hospital for that!!

> > > Glynis

> >

>

[Guest guest]

> I would be interested to know why you were denied a referral to a

London

> Endocrinologist .

My GP said that he wasn't allowed to refer me to an endo that wasn't

local. He said that when he referred me to Dr N. (who wasn't local),

that was an exception, but since the regulations have changed, blah

blah. He also said he can't refer me to a spefic Dr at the hospital. I

have since found out that none of this was true, but I think that GP is

'fed up' with me refusing to take the antidepressants he think are the

simple solution to all my problems! Sigh...

Your GP should get up to date. If there is not a specialist in

thyroid disease in your area, or a specialist in what you need in your area,

then he can and must refer you to one outside of your area. Most

endocrinologists are specialists in diabetes and sadly, know little or

nothing about thyroid disease. He can refer you to a hospital where the

specialist you want to see works from and then you can phone the clinic nurse

and ask to be placed with the particular doctor of your choice and also ask for

his name to be placed into your medical notes saying that you will not be seen

by any other doctor but him/her.

> Didn't she even hint that your dose might

need titrating or you may

have one

> of the many associated conditions going along with your symptoms of

> hypothyroidism which could be stopping the thyroid hormone from being

> properly utilised at the cellular level?

Yes, I asked her that, she said she could offer me a synacthen test in

about 11 week's time... At that point the conversation was already going

into one clear direction, so I just saved my breath on telling her that

I was well aware that this would only show extreme levels of adrenal

insufficiency and I didn' t bother asking for a test of zinc, magnesium,

ferritin, etc...

The short synacthen test will only test to see whether you have

's or Cushing's, and she knows that. This test does not check for low

adrenal reserve. You will need the 24 hour salivary adrenal profile to check

your cortisol and DHEA secretion levels at four specific times during the day.

Re Dr Skinner, I feel I should make it clear from the start that

if you are expecting Dr Skinner to test and treat your adrenals, he does not do

this anymore, so if you want your adrenals tested and treated, you will either

need to do this yourself, or see somebody like Dr Peatfield who will diagnose

and recommend appropriate supplements for low adrenal reserve for you. I think

Dr S has become too afraid of a certain organisation who are keeping a very

close eye on what he does and he is trying more not to upset the apple cart. The

NHS do not recognise or treat low adrenal reserve. It is all becoming quite

frightening. He will, however, treat using T4/T3 combination, either

synthetic or natural, or uses T3 alone. This other GP sounds excellent, why

don't you change your GP over to this one . You don't HAVE to stay with

the one you are with. Just make it clear that you are seeking somebody who has

more experience in the world of thyroid disease, which your present GP

obviously doesn't have - and it is important that you have a doctor who is

interested in your health.

Luv - Sheila

[Guest guest]

Hi Lynne

Below is a reminder of a letter I sent to my MP when we were all

asked to write to the Government to put forward any ideas we had for them

saving money. Needless to say, I received only a response to say my letter had

been received and thanked for it, but not a dickey bird since. I recommended

that all our members send a similar letter to their own MP but am posting it

again here if you, or anybody else feels the need to do the same.

Dear

(MP)

Considerable

Financial Savings Achievable Within the NHS

I

am aware that the new Coalition Government has issued a warning on the UK's

'staggering' debt in preparation for the Budget, and that Government faces a

" formidable " challenge to repair its battered public finances. I

understand the deficit, already in excess of £150bn, is forecast to hit £163bn

this year and you want members of the public to suggest where savings could be

made.

I

am a member of the Internet Thyroid Support Forum run by Thyroid Patient

Advocacy (TPA) www.tpa-uk.org.uk where

there are over 2100 + members and 3 medically qualified advisers. All of these

members are NHS failures who have been either unable to get a proper diagnosis

for their symptoms or who are being given the wrong thyroid hormone replacement

or insufficient thyroid hormone replacement for their symptoms of

hypothyroidism. TPA’s purpose is to campaign for a better diagnostic and

choice of treatment protocol for thyroid disease sufferers, especially those

with the symptoms of hypothyroidism.

Ongoing

ill-health has forced many sufferers to leave paid employment and live on State

Benefits – an unnecessary " tax " on the Nation's wealth.

Accurate diagnosis and appropriate treatment under a properly revised protocol

would help them regain normal health and bring considerable financial savings

for the Health Service.

I

believe Thyroid Patient Advocacy (TPA) can help if the Government orders a

Public Enquiry into the events, actions and statements published by the BTA et

al. Their actions have denied over a quarter of a million UK citizens an

appropriate choice of thyroid hormone replacement that would return them to

optimal health.

The

problem appears to be political and/or legal problem rather than medical,

because there are copious patient counterexamples to the dictates that medicine

has made, and is making. Some of these clearly show the treatment of many

patients contravenes their Human Rights.

 

Tens

of thousands of UK citizens are denied a proper diagnosis because of the

excessive ‘normal’ reference range of thyroid function blood tests.

The seriously flawed 'Guidance on the Diagnosis and Management of Primary

Hypothyroidism' created by the Royal College of Physicians, London (RCP) and

the British Thyroid Association (BTA) et al, tells doctors they should not

diagnose hypothyroidism if a patients' serum Thyroid Stimulating Hormone (TSH)

test result is within the reference range of 0.5 to 10.0uM/L.   

The

UK reference range is unmatched by any other country on the globe. Many,

realising their TSH reference ranges were missing patients, reduced their range

considerably. In 2003, the American Association of Clinical

Endocrinologist’s (AACE) recommended their TSH range be narrowed to

0.3mU/L to 3.0mU/L (down from 5.mU/L). Germany, Belgium and Sweden’s

range is now 0.3 to 2.5mU/L. Belgian endocrinologists recommend the upper limit

be dropped further to 1.5. In 2005, a further 13,000,000+ sufferers were diagnosed

and treated with thyroid hormone replacement.

Every

cell in the body and brain needs T3 to function – NOT thyroxine (T4). 

Yet, RCP, BTA ‘guidance’ recommends doctors treat hypothyroidism

with the mainly inactive levothyroxine (T4) ONLY and that tri-iodothyronine

(T3), (the ACTIVE thyroid hormone) whether synthetic or natural, should not be

used. Thyroxine (T4) is a pro-hormone (mainly inactive) that must convert to T3

or it is unusable and the body becomes toxic. Synthetic thyroxine (Levothyroxine)

‘appears’ to work for many sufferers but a large minority, for many

and varied reasons, are unable to convert it to T3.

Frighteningly,

the BTA and RCP actively boycott all T3-containing thyroid hormone products.

Many sufferers need T3. Medical science showed this over 40 years ago,

yet the BTA, RCP refuse to acknowledge this. There are many patient and

scientific counterexamples to T4-only treatment.  These patients fare poorly

under the medical prescriptions (T4 –only) but do well under T3.

The

proscription of T3 containing products is not only illogical, unethical and

nonsensical; it is not medically reliable. Many counterexamples are found in

living, testifying patients and in peer-reviewed medical science journals. The

counterexamples demonstrate the problem is political or legal rather than

medical. Without T3, we die.

I

MUST stress the pernicious involvement of the RCP, BTA et al. as to the serious

harm they cause through their many misleading and often inaccurate statements,

eg " the British Thyroid Association recommend the use of sensitive and

specific blood tests as the only method for the precise diagnosis of thyroid

dysfunction and for the monitoring of treatment with approved medications "

and also “Overwhelming evidence supports the use of Thyroxine (T4)

alone in the treatment of hypothyroidism. We do not recommend the prescribing

of additional Tri-iodothyronine (T3) in any presently available formulation,

including Armour thyroid, as it is inconsistent with normal physiology, has not

been scientifically proven to be of any benefit to patients, and may be

harmful. "

There

is no scientific proof that Levothyroxine-sodium - only  benefits patients. No

studies or clinical trials have ever been done. To date, the RCP and BTA have

not produced any of the “overwhelming evidence” – their

statements are merely opinion. This ‘opinion’ is harming patients.

Attached

is Dr. Marshal Goldberg's paper which explains why there are failed

diagnostics, i.e., false negative diagnostics which the RCP et al refuse

to consider. Goldberg’s thesis is backed up by Refetoff [Refetoff S,

Weiss RE, Usala SJ, The Syndromes of Resistance to Thyroid Hormone, Endocr Rev,

1993, 14(3):348-399] and Braverman [braverman LE, Ingbar SH, Keinwem S,

Conversion of Thyroxine (T4) to Tri-iodothyronine (T3) in Athyreotic Human

Subjects, The J Clin Invest, 1970, 49] and their respective co-authors.

Goldberg points to other papers that claim to have observed failures in the

T4-only therapy (1947 & 1954) as well as the paper by Baiser et al.

[baisier, WV, Hertoghe, J, Beekhaut, W, Thyroid Insufficiency? Is Thyroxine the

Only Valuable Drug? Journal of Nutritional and Environmental Medicine, Vol 11,

No. 3, Sept 2001, pp 159-166].

We

have sent these papers to the RCP (London), BTA et al., on numerous occasions

and asked them to take this scientific research into account, but they do not.

Proper differential diagnostic protocol requires examination of all physical

issues, as does the evidence-based medicine.

The

RCP, BTA ignore low body temperature when trying to reach a diagnosis. Yet the

top two causes for low body temperature are Hypothermia and Hypothyroidism

(under-active thyroid). The RCP, BTA refuse to accept the medical evidence

available or to amend their ‘guidance’. TPA, in refuting their

claims, has adduced hundreds of references to which the attention of the RCP,

BTA et al. has been drawn. They have never acknowledged receipt.

The

President of the Royal College (London)  has asserted that the RCP will not

enter into any further correspondence regarding this matter. For the 250,000 +

sufferers left without a proper diagnosis and correct treatment, this is an

appalling statement to make.

Doctors

are afraid to go against such ‘guidance’ as they rightly fear being

arraigned before the GMC (some doctors have already been) so will not prescribe

any T3, either synthetic or natural, even though this is indicated for specific

patients. Instead, they prescribe many and varied prescriptions including

selective serotonin reuptake inhibitors (SSRIs) and antidepressants. 

Most

patients being denied a proper diagnosis are prescribed antidepressants; the

majority of our 1780 members have confirmed this. The study by Irving Kirsch,

Department of Psychology, University of Hull (25/02/2008) is the first to

examine both published and unpublished evidence of the effectiveness of SSRIs

which account for 16 million NHS prescriptions a year. This study, the largest

of its kind, concluded that antidepressants do not work. More than £291 million

was spent on antidepressants in 2006, including nearly £120 million on SSRIs.

Depression, anxiety, memory loss and Alzheimer’s disease all have an

association with lower thyroid hormone levels. Research has shown that improvement

can be achieved with thyroid hormone replacement therapy.

Further,

those suffering symptoms of hypothyroidism habitually use more prescription

drugs, especially for diabetes, cardiovascular disease and gastrointestinal

conditions putting great financial strain on the NHS and an overwhelming

burden on the 250,000 sufferers in the UK.

Imprecise

language causes and prolongs suffering

The

BTA and the RCP give two completely physiologically different definitions of

'hypothyroidism'. This causes concern and confusion amongst doctors and

patients alike.

s    The RCP (London)

defines ‘hypothyroidism as " the clinical consequences of

insufficient secretion by the thyroid gland " - meaning 'hypothyroidism' is

ONLY associated with the THYROID GLAND. This definition is the correct and

narrow definition.

s    The BTA however,

define hypothyroidism as " the clinical consequences of insufficient

levels of thyroid hormones in the body " .  This ‘broad’

definition is associated with peripheral metabolism and peripheral cellular

hormone reception, which produces insufficient thyroid hormones in the body. 

If

the first definition is correctly called " hypothyroidism " , this can,

hopefully, be treated with levothyroxine sodium-only. But then the second

definition should not be called ‘hypothyroidism’. The diagnosis

should be ‘Clinical Euthyroidism’, ‘Type 2

Hypothyroidism’ or ‘Euthyroid Hypometabolism’. Peripheral

thyroid hormone deficiencies would then be treated with the active thyroid

hormone replacement T3 – NOT T4.

It

appears that, to avoid suggesting T3 is needed, the diagnostics recommended for

the symptoms of hypothyroidism focus only on the thyroid gland. When these

symptoms continue, because they come from elsewhere, ie peripheral thyroid

hormone deficiencies at cellular level, they are not treated by medicine.

Instead, if a patient continues to complain of the symptoms of hypothyroidism,

and has ‘normal’ thyroid function test results, s/he is told

“you are suffering from a functional somatoform disorder” or

“your symptoms are non-specific” or “it’s old

age”.

These

continuing symptoms reduce the patient's ability to function or to resist the

dangerous consequences of low thyroid eg serious mental problems, seizures,

heart disease, diabetes including misdiagnosis and complications, constipation

resulting in colon cancer, and all female problems (due to high amounts of

dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts,

PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps,

anaemia, elevated CPK, elevated creatinine, elevated transaminases,

hypercapnia, bladder problems leading to infections, hyperlipidaemia,

hypoglycaemia, hyponatraemia, hypoxia, leukopaenia, respiratory acidosis and

others....

Last

year, Anne Milton MP asked a Question in the House on behalf of TPA in an

attempt to obtain clarification of the correct definition of hypothyroidism.

Ann Keen MP was asked to give an answer, but her response was unsatisfactory,

so clarification of this matter remains unresolved.

Repeated

approaches to the DoH over the past 6 years have been systematically ignored,

other than to send one of their many pro-forma letters. Diagnostic and

treatment protocol for those suffering symptoms of hypothyroidism must be

thoroughly investigated without delay. Obfuscation around the definition of

hypothyroidism is one of the main reasons 250,000+ patients are improperly

diagnosed and inadequately treated. Fixing this could save the NHS £1,000,000s

and the 250,000+ suffering the symptoms of hypothyroidism could enjoy much

improved health.

Our

campaign for a better diagnostic and treatment protocol cannot progress because

of the intransigent opposition from the Royal College of Physicians (London)

and the British Thyroid Association. They refute any suggestion that they

should change their policy stance in their guidance on the diagnosis and

management of primary hypothyroidism despite the great deal of scientific

evidence adduced to support this demand for change.

In

short, the RCP, as a setter of medical standards to improve medical practice

through self-regulation, appears to be " above the law " and a 'closed

shop'. Their standards and quality are seen as implicit rather than explicit,

with government and society trusting them to protect the public so granting the

profession considerable autonomy in the process. And there lies the

problem…

Please

will you help all sufferers of the symptoms of hypothyroidism? Ask

Lansley MP, who has the power to put an end to this appalling situation, to

stop this unnecessary suffering. A Public Enquiry may be necessary to give

hypothyroid sufferers a chance to be heard to get the justice they deserve.

I

look forward to hearing from you in due course. Meanwhile, if you would like

further information about this matter, please contact Thyroid Patient Advocacy www.tpa-uk.org.uk

Kind

regards

Put

your own name here

Shame we can't calcuate the cost of being treated correctly versus the cost of

misdiagnosis. I wonder if this would be possible? I am sure we would be shocked

at how much the NHS is wasting by poor quality thyroid care. It would make

interesting reading. I have a vision of an on-line database where we all log in

and calculate the cost person by person..adding up to a huge total no doubt!

That would get to the crux of the matter - we might get people listening to us

then - money talks in this age of austerity!

_,___