Re: They want to stop my thyroxine!

[Guest guest]

After working up to 250 mcgs thyroxine, I would be extremely reluctant

to stop this just to prove a point to your GP. If you are OK on this

dose, then please ask your GP to first refer you to an endocrinologist,

somebody who specialises in thyroid disease. I have heard of several

people who did what they GP recommended, either halved their dose or

stopped it completely, only to have all their old symptoms and signs

come back, and then, having to spend weeks/ months trying to regain

their health again. You should write to your GP telling him/her that you

do not want to do this explaining that your symptoms and signs have gone

since you were on this dose, and asking for a referral. This letter then

has to go into your medical notes, and if you suffer adverse

consequences as a result of stopping your thyroxine, and he has not

referred you, then he will probably have to answer some questions. What

were the results of your last blood tests for thyroid function. Can you

get them and post them here together with the reference range for each

test?

Luv - Sheila

>

> Hi

> I was at my GP's surgery this week about another matter and they said

> they had been looking at my thyroid blood tests and they want to stop

> it to see if I can make my own. I had half my thyroid taken away 13

> years ago and spent 2 years post op trying to convince my doctor that

> I had symptoms despite normal blood results.

> My new GP had read about sub clinical symtoms and prescribed my

> thyroxine. It has increased over the years and am now on 250mcgms

> daily. I know this is a high dose but I have been on it for about 4

> years and feel fine on it. I don't want to go back to feeling awful

> and gaining weight, being lethargic etc. Any advice out there - you

> all seem so knowledgeable.

> Thanks

>

[Guest guest]

Thanks for that . I was so shocked that they wanted to do this, I

forgot to ask what my results were. I will phone tomorrow and ask

them, then postthem here.

Thanks

>

>

>

> After working up to 250 mcgs thyroxine, I would be extremely reluctant

> to stop this just to prove a point to your GP. If you are OK on this

> dose, then please ask your GP to first refer you to an endocrinologist,

> somebody who specialises in thyroid disease. I have heard of several

> people who did what they GP recommended, either halved their dose or

> stopped it completely, only to have all their old symptoms and signs

> come back, and then, having to spend weeks/ months trying to regain

> their health again. You should write to your GP telling him/her that you

> do not want to do this explaining that your symptoms and signs have gone

> since you were on this dose, and asking for a referral. This letter then

> has to go into your medical notes, and if you suffer adverse

> consequences as a result of stopping your thyroxine, and he has not

> referred you, then he will probably have to answer some questions. What

> were the results of your last blood tests for thyroid function. Can you

> get them and post them here together with the reference range for each

> test?

>

> Luv - Sheila

> >

> > Hi

> > I was at my GP's surgery this week about another matter and they said

> > they had been looking at my thyroid blood tests and they want to stop

> > it to see if I can make my own. I had half my thyroid taken away 13

> > years ago and spent 2 years post op trying to convince my doctor that

> > I had symptoms despite normal blood results.

> > My new GP had read about sub clinical symtoms and prescribed my

> > thyroxine. It has increased over the years and am now on 250mcgms

> > daily. I know this is a high dose but I have been on it for about 4

> > years and feel fine on it. I don't want to go back to feeling awful

> > and gaining weight, being lethargic etc. Any advice out there - you

> > all seem so knowledgeable.

> > Thanks

> >

>

[Guest guest]

MODERATED TO DELETE MESSAGES PREVIOUSLY READ. PLEASE CHECK YOU HAVE DONE THIS

BEFORE CLICKING 'SEND' - SHEILA

_______________________

Called in at my GP today and asked for my thyroxine results - these

were done in January.

TSH <0.04

free T4 27

I see they didn't do T3

Any thoughts please?

>

> Thanks for that . I was so shocked that they wanted to do this, I

> forgot to ask what my results were. I will phone tomorrow and ask

> them, then postthem here.

> Thanks

>

[Guest guest]

Have you any range for that?

Have you ANY symptoms of being overactive at all? Palputations, heat

intollerence, shortness of breath etc etc?

lotsa luv

Dawnx

> >

> > Thanks for that . I was so shocked that they wanted to do this, I

> > forgot to ask what my results were. I will phone tomorrow and ask

> > them, then postthem here.

> > Thanks

> >

>

[Guest guest]

Hi weegreengirl

I can understand your GP wanting you to cut down on your levothyroxine,

as your results do show that you are taking too much. Your Free T4 is

outside of the reference range (over the top) and your TSH is below the

range, which does indicate you need to cut back. Would you be prepared

to try the cut back and see what happens, or have you already tried this

and had a bad reaction. If so, I would ask to be referred to an

endocrinologist of your choice to see what is happening. You may need to

cut back your thyroxine and add in some T3 in the form of Liothyronine.

This is something you could suggest to your doctor.

luv - Sheila

>

> Called in at my GP today and asked for my thyroxine results - these

> were done in January.

> TSH <0.04

> free T4 27

> I see they didn't do T3

> Any thoughts please?

>

[Guest guest]

Hi,

27 is a very high for T4 even without knowing the range., but without

the T3 we can't tell if you are converting to T3. Dr. toft's book says that

it is acceptable to have a high T4 to get rid of symptoms.

Subject: Re: They want to stop my thyroxine!

_______________________

Called in at my GP today and asked for my thyroxine results - these

were done in January.

TSH <0.04

free T4 27

I see they didn't do T3

Any thoughts please?

------------------------------------

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing

medication.

[Guest guest]

No I have no symptoms of overactive. My weight is stable, I am always

cold (no change there! ) . Occasionally have palpitation but

usually after a large coffee. I feel absolutely fine. I just don't

know how to approach this really. Am I entitled to say I don't want to

stop my dose?

>

> Have you any range for that?

>

> Have you ANY symptoms of being overactive at all? Palputations, heat

> intollerence, shortness of breath etc etc?

>

> lotsa luv

> Dawnx

>

>

[Guest guest]

I would be prepared to change but I really do not want any symptoms

back. I think I will ask to see an endocrinologist. Is there somwonw

in Glasgow anyone would recommend?

Thanks

>

>

> Hi weegreengirl

>

> I can understand your GP wanting you to cut down on your levothyroxine,

> as your results do show that you are taking too much. Your Free T4 is

> outside of the reference range (over the top) and your TSH is below the

> range, which does indicate you need to cut back. Would you be prepared

> to try the cut back and see what happens, or have you already tried this

> and had a bad reaction. If so, I would ask to be referred to an

> endocrinologist of your choice to see what is happening. You may need to

> cut back your thyroxine and add in some T3 in the form of Liothyronine.

> This is something you could suggest to your doctor.

>

> luv - Sheila

> >

> >

> >

>

[Guest guest]

My FT4 is 32.4 and I am on 200mcg thyroxine and after seeing an endo

following feeling terible after a GP reduced the dose this is what

mine needs to be for me to be euthyroid as confirmed by other tests

and physical examination. My FT3 is 7. If you are not hyper as I am

not I would be reluctant to do anything.

Chris

> >

> >

> > Hi weegreengirl

> >

> > I can understand your GP wanting you to cut down on your

levothyroxine,

> > as your results do show that you are taking too much. Your Free

T4 is

> > outside of the reference range (over the top) and your TSH is

below the

> > range, which does indicate you need to cut back. Would you be

prepared

> > to try the cut back and see what happens, or have you already

tried this

> > and had a bad reaction. If so, I would ask to be referred to an

> > endocrinologist of your choice to see what is happening. You may

need to

> > cut back your thyroxine and add in some T3 in the form of

Liothyronine.

> > This is something you could suggest to your doctor.

> >

> > luv - Sheila

> > >

> > >

> > >

> >

>

[Guest guest]

Hi weegreengirl

Yes, you are entitled to tell them that you do not want to stop your

dose. You may have to be assertive about this. Thyroid function tests in

the UK are WAY out of line with the rest of the world - and need to be

re-addressed by the powers that be. They should be goiong by your

symptoms and signs and how you feel, and not by blood results alone.

Luv - Sheila

>

> No I have no symptoms of overactive. My weight is stable, I am always

> cold (no change there! ) . Occasionally have palpitation but

> usually after a large coffee. I feel absolutely fine. I just don't

> know how to approach this really. Am I entitled to say I don't want to

> stop my dose?

>

>

>

>

> >

> > Have you any range for that?

> >

> > Have you ANY symptoms of being overactive at all? Palputations, heat

> > intollerence, shortness of breath etc etc?

> >

> > lotsa luv

> > Dawnx

> >

> >

>

[Guest guest]

Thanks ..that's useful to know. It's good to compare with

people. I know everyone is different but when someone is in a similar

position it is good anecdotal evidence.

>

> My FT4 is 32.4 and I am on 200mcg thyroxine and after seeing an endo

> following feeling terible after a GP reduced the dose this is what

> mine needs to be for me to be euthyroid as confirmed by other tests

> and physical examination. My FT3 is 7. If you are not hyper as I am

> not I would be reluctant to do anything.

> Chris

>

>

[Guest guest]

A few things you may like to consider.

I have never stopped taking my thyroxine in preparation for tests and

whilst I did not have my thyroid removed, I have no thyroid function

of my own it had given up by the time I was 13.

On a reduced dose of 150mcg my FT4 was 25, a drop of 7.4. Therefore

each 50mcg I take gives me an FT4 of 7.4. 7.4 x 4 (for each 50mcg) =

29.6, so if I stopped taking it completely I would have an FT4 of 2.8

and FT3 of 0.

We also found my TSH is <0.1 regardless of dose so reducing the

thyroxine to increase the TSH did not work. I was told it should be

around 1.0 to be normal.

Do you have previous TFTs whilst you were increasing your dose that

you can compare?

Chris

> >

> > My FT4 is 32.4 and I am on 200mcg thyroxine and after seeing an

endo

> > following feeling terible after a GP reduced the dose this is

what

> > mine needs to be for me to be euthyroid as confirmed by other

tests

> > and physical examination. My FT3 is 7. If you are not hyper as I

am

> > not I would be reluctant to do anything.

> > Chris

> >

> >

>

[Guest guest]

HI Chris

Although your thyroid function tests may be OK for you by not

stopping your thyroxine 24 hours before the test, we are all

different. If people take their thyroid hormone replacement in

general just before a thyroid funciton test, in all likelihood, the

TFT's could show the levels to be high and medical practitioners

would be reluctant to give what the patient feels is the necessary

dose increase they are craving. There is nothing more heart-breaking

for a patient who KNOWS they are not on the right dose and need an

increase for their doctor to refuse this becuase their results show

they don't need this. Even Professor Weetman says you should stop

your thyroxine before a TFT.

Sheila

>

> A few things you may like to consider.

>

> I have never stopped taking my thyroxine in preparation for tests

and

> whilst I did not have my thyroid removed, I have no thyroid

function

> of my own it had given up by the time I was 13.

>

> On a reduced dose of 150mcg my FT4 was 25, a drop of 7.4. Therefore

> each 50mcg I take gives me an FT4 of 7.4. 7.4 x 4 (for each 50mcg)

=

> 29.6, so if I stopped taking it completely I would have an FT4 of

2.8

> and FT3 of 0.

>

> We also found my TSH is <0.1 regardless of dose so reducing the

> thyroxine to increase the TSH did not work. I was told it should be

> around 1.0 to be normal.

>

> Do you have previous TFTs whilst you were increasing your dose that

> you can compare?

> Chris

>

>

[Guest guest]

EDITED TO REMOVE PREIOUS MESSAGES- JENNY

Hi Sheila

Yes I do realise this, the point I was trying to make was that all

my results have always been totally consistent. For instance I have

not taken it before a test on one occasion and not on another. The

Endo knew this and took it into consideration and thus agreed that

although my FT4 is 32.4 on 200mcg I am not hyper and should be on

whatever dose I am comfortable with.

Chris

>

> HI Chris

> Although your thyroid function tests may be OK for you by not

> stopping your thyroxine 24 hours before the test, we are all

> different. If people take their thyroid hormone replacement in

> general just before a thyroid funciton test, in all likelihood,

the

> TFT's could show the levels to be high and medical practitioners

> would be reluctant to give what the patient feels is the necessary

> dose increase they are craving.

[Guest guest]

Okidoki thanks for the explanation.

Luv - Sheila

>

>

> Yes I do realise this, the point I was trying to make was that all

> my results have always been totally consistent. For instance I have

> not taken it before a test on one occasion and not on another. The

> Endo knew this and took it into consideration and thus agreed that

> although my FT4 is 32.4 on 200mcg I am not hyper and should be on

> whatever dose I am comfortable with.

>

> Chris

>

>

>

[Guest guest]

I wasn't aware of stopping medication before hand that is useful to

know. I will do that next time. As for other results , I would have to

ask GP.

This site is great..I am learning so much. Thanks everybody.

>

> HI Chris

> Although your thyroid function tests may be OK for you by not

> stopping your thyroxine 24 hours before the test, we are all

> different. If people take their thyroid hormone replacement in

> general just before a thyroid funciton test, in all likelihood, the

> TFT's could show the levels to be high and medical practitioners

> would be reluctant to give what the patient feels is the necessary

> dose increase they are craving. There is nothing more heart-breaking

> for a patient who KNOWS they are not on the right dose and need an

> increase for their doctor to refuse this becuase their results show

> they don't need this. Even Professor Weetman says you should stop

> your thyroxine before a TFT.

>