Re: Hashimoto's being treated with T4 only

[Guest guest]

Hi Del,

Hashimotos disease is a cause of Hypothyroidism, but there are other causes too.

Doctors currently treat the hypothyroidism, not the cause and the treatment for

hypothyroidism is to replace the hormones which are needed. There is not

considered to be any treatment for Hashimotos Disease.

The information which is put forward by the RCP is that hypothyroidism can be

treated by giving levothyroxine only, and indeed, this works for many people.

The failure rate is acknowleged to be 13%. So 87% of the people on

levothyroxine are thought to be happy with it.

The rest of us (13%) have to find out why we do so badly on levothyroxine alone,

which is why forums like this one exist. If you feel that the levothyroxine is

not working for you, list your symptoms and ask why you still have them. Be

prepared as many people are told that their symptoms are not down to

hypothyroidism as blood tests are 'normal'. You can only begin to see a

proper picture if you know TSH, free t4 and free t3 results. Do you have any

of these test results?

>

>

> I am going to see one of these doctors on Thursday and just wanted to check

with you all what I should tell him. I will be insisting on being referred to a

private doctor, since T4-only therapy is not the best option for Hashi's - am I

right?

>

> I am shocked. I have been treated with hypothyroidism for a whole year - and

it takes my own research into my test results to have a complete diagnosis.

>

[Guest guest]

Hello Delyth

Like you I have autoimmune (Hashi's) hypothyroidism and have not recovered my

wellbeing on T4 (thyroxine) only treatment. Like others on here it seems to be a

bit pot(or possibly postcode) luck as to whether you are offered any alternative

treatment. I have a very sympathetic GP but he admits his knowledge is

inadequate and doesn't seem to have the time (or the interest in this area) to

educate himself further about thyroid problems and how they affect our daily

lives. Even when I book a double appointment I still sometimes feel I'm being

rushed out the door as a time waster as GPs see the symptoms as not life

threatening (except maybe high cholesterol which they seem indifferent to). I've

seen 2 NHS consultants over the past 4 years who both said my " remaining "

symptoms weren't down to my thyroid (lol - they're the symptoms that took me to

GP in the first place!).All they kept doing was 'investigating' the individual

symptoms with loads of (probably expensive) tests rather than LISTEN to or even

EXAMINE their patient.

I don't wish to discourage you but unless you are very lucky (or doggedly

determined and have lots of time to put the pressure on) you won't get very far

within the NHS. It has closed ranks on thyroid patients having convinced itself

(or been convinced by the big drug companies?) that its a simple matter of

taking synthetic thyroxine. Not one doctor I've seen would even talk about

" natural thyroid treatments " or alternative dietary/nutritional supplements let

alone prescribe them.

In the end it seems you have to take your health in your own hands to find a

solution that works for you. I've personally decided to see a private GP (highly

thought of & one of TPA-UK's medical advisors) when I have time off over the

Easter School break (as I work term time & cannot take time off then).

I recently told my NHS GP I was not at all happy with the way I've been treated

by the NHS as I have many remaining symptoms which whilst not serious in their

eyes; have a very debilitating effect on my quality of life. Many days ( &

nights)are a struggle to get through and I'm just not prepared to 'put up with

it' as one consultant once told me! At the time I saw my GP I was actually

feeling fairly well but said the next time I feel rubbish I'm seeing a private

GP who has a different approach. For once my GP was very helpful and printed off

my most recent results and the letters from the various tests/consultants. He

seemed impressed with the information on the private GP and asked me to let him

know who I was seeing and to keep him 'in the loop'. He even offered assistance

with costs by offering to get any blood tests or other tests which the NHS could

cover done and to prescribe any suggested treatments which are allowable under

the NHS.

I get the feeling a lot of the problem in getting good care and therefore a good

result, as others on here will probably confirm, is GPs (and Endos!!) lack of

knowledge. They also seem to have lost their way in terms of patient centred

care and are driven by time slots, targets, cost and are hide bound by

meaningless guidelines.

You will get a LOT of help and as important, support, from TPA and its members

so use its resources and follow up on the advice you receive.

I hope you find a solution which works for you,

Regards

[Guest guest]

In yesterday's online New England Journal of Medicine, a physician bemoans the

test-mad practice of medicine today. (The courageous Dr. C. Lowe has

called this practice " extremist medical technocracy " .)

http://healthpolicyandreform.nejm.org/?p=13874 & query=TOC :

Perspective

Daring to Practice Low-Cost Medicine in a High-Tech Era

NEJM | March 2, 2011 | Topics: Cost of Health Care, Health Care Delivery, Health

IT

Palfrey, M.D.

[snip]

I have been teaching pediatrics to residents and medical students for more than

three decades, but over the past few years, as I've watched trainees at work,

sitting at their computers, and ordering and monitoring tests, I've grown

worried that the practice of medicine has tipped out of balance.

[snip]

I believe that we must rediscover the value of clinical judgment and relearn the

importance of the personal, intellectual, scientific, and administrative thought

that is central to the best practice of medicine.

[snip]

Our time and attention have been diverted to the task of sorting out data

instead of sorting out what is important to our patients, their families, and

the community at large.

> All they kept doing was 'investigating' the individual symptoms with loads of

(probably expensive) tests rather than LISTEN to or even EXAMINE their patient.

[Guest guest]

Good Morning everyone!

Thanks , and Pete for your replies - it certainly sounds like we

have quite a battle on our hands.

- I have never been tested for T3. I can barely get a clear answer from

my doctors when I've been tested for T4 and TSH. They don't give me any numbers

- they just tell me, breezily, " oh, it's normal " - and usually throw some other

tablets at me, to get me out of there! A scenario that many of us here are

familiar with, I'm sure.

- you are on the right track seeking specialist help from one of the tpa

advisors and I wish you all the luck in getting the help you deserve. I have my

doubts about the rest of the medical world regarding thyroid issues now that I

have delved a little into it! I couldn't get a sensible response from a

consultant specialist's secretary yesterday, in a private hospital - which would

have cost me the earth - when she couldn't tell me whether the consultant

treated 'outside T4-only therapy'. I don't think she understood what I was

talking about. Perhaps she would have more comfortable if I was talking about

Manolo Blahnik's shoes other than her consultant's work... but let's not go

there!

Pete - thanks for the interesting link - at least there's one doctor who sees

how frustrating this whole process is, for patient as well as doctor, when

treatment consists of blood tests alone and symptoms are ignored. What kind of

crazy world are we living in??

Aaaargh!!!!!!

Del Cardiff.

[Guest guest]

Del,

Private testing for T3 is less than £20 from Lab 21, and Genova offer a full

panel, TSH, T4 and T4 for £85 if you use the tpa discount. (Details in files).

I'd be looking at getting my test results so that at least you can see the whole

picture and work out where you stand... he doctor is working blind and can

never give you the right treatment if he doesn't know or understand whether you

have t4/t3 conversion issues...

You can argue this one out withn your doc to try and get the tests done, or you

can just get your own tests and work it out. The doctor is obliged, by law, to

give you results, with numbers and test ranges of any tests which have been

done, but I suspect he's not even asking for the right tests.

I find that if I have test results the doc hasn't bothered to do, it puts me

in a better position if the doc tries to do battle. I know, I know, we

shouldn't have to do this, but if we wait for the world to run as we'd like it

too, we may have a long wait.

x

>

>

> - I have never been tested for T3. I can barely get a clear answer from

my doctors when I've been tested for T4 and TSH. They don't give me any numbers

- they just tell me, breezily, " oh, it's normal " - and usually throw some other

tablets at me, to get me out of there!

>

[Guest guest]

Thanks -

This Lab 21 sounds like a good idea! I've had the old T4 and TSH tested. And I'm

sure I can arm wrestle someone at my surgery for my results (!)

But the conversion thing is the one that is my main priority at the moment - as

it is for many of us.

Lab 21 - here I come!

Thanks again!!

Del

> >

>

> >

> > - I have never been tested for T3. I can barely get a clear answer

from my doctors when I've been tested for T4 and TSH. They don't give me any

numbers - they just tell me, breezily, " oh, it's normal " - and usually throw

some other tablets at me, to get me out of there!

> >

>

[Guest guest]

Hi Sheila,

You're right. I ought to try and be a little more determined in this. I did

phone the surgery last week and insist on having copies of my test results -

about four lots of blood test, if I remember rightly.

The information I received came on one sheet of paper, with none of the numbers

or ranges visible, just things like, " GP comment : normal " and " lab comment " and

useless stuff like that.

It feels like I'm banging my head against a brick wall with these people. But, I

shall persevere - I'll give them a ring this afternoon and explain what I need

to the last letter!!

Thanks for providing the motivation, Sheila!

Del Cardiff.

>

> Del, never, never, NEVER allow a doctor to tell you that your tests have

> been returned within the 'normal' reference range and therefore, this shows

> you are 'normal' and don't have a problem. Always, always, ALWAYS get the

> test results from your doctor and the reference range for all those tests

> and post them on the forum, where we will tell you whether you are 'normal'

> or not.

>

>

>

>

> __

>

[Guest guest]

Del - don't allow a receptionist or doctor to mess you around,

state categorically that you are entitled to see them and they cannot withhold

any thing from you http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68 & subcategoryid=160

" Under the Data Protection Act 1998, you have a legal right to

apply for access to health information held about you. This includes your NHS

or private health records held by a GP, optician or dentist, or by a hospital.

A health record contains information about your mental and physical

health recorded by a healthcare professional as part of your care.

If you want to see your health records, you don't have to give a

reason. "

Luv

- Sheila

You're right. I ought to try and be a little more determined in this. I did

phone the surgery last week and insist on having copies of my test results -

about four lots of blood test, if I remember rightly.

The information I received came on one sheet of paper, with none of the numbers

or ranges visible, just things like, " GP comment : normal " and

" lab comment " and useless stuff like that.

It feels like I'm banging my head against a brick wall with these people. But,

I shall persevere - I'll give them a ring this afternoon and explain what I

need to the last letter!!

Thanks for providing the motivation, Sheila!

Del Cardiff.

>

> Del, never, never, NEVER allow a doctor to tell you that your tests have

> been returned within the 'normal' reference range and therefore, this

shows

> you are 'normal' and don't have a problem. Always, always, ALWAYS get the

> test results from your doctor and the reference range for all those tests

> and post them on the forum, where we will tell you whether you are

'normal'

> or not.

>

>

>

>

> __

>