Re: Blood test results after 6 weeks with no thyroid hormone

[Guest guest]

If you want a NHS diagnosis Miriam, I would not have started

taking T3 with such a high TSH. Taking T3 could reduce your TSH drastically and

then you might need to be off the T3 for a long time again in order to get your

TSH to rise again. Your free T4 is below the reference range where, for those

not taking any thyroid hormone replacement, it should be just above the middle

of the reference range, so yours should really be around 17pmol/l. Your free T3

should be in the upper third of the reference range, but it is too low.

If you don't feel like facing up to your GP, then write him a

letter, and ask for your letter of requests to be placed into your medical

notes.

First, tell him that you are now determined to get to the bottom

of why you have so many problems for such a long time and that you would

greatly appreciate his help and guidance in finding the cause.

Enclose a copy of the private serum thyroid function test

results and say that because of this, you would like to be referred to an

endocrinologist of your choice - if you want my doctors list, let me know and I

will send it to you.

List what symptoms you are suffering and the signs you are

showing. Check these against those in our web site www.tpa-uk.org.uk under 'Hypothyroidism'.

Take your basal temperature for 4 or 5 mornings before you get

out of bed and list those that are 97.8 degrees F or 36.6 degrees C (or less).

List any members of your family who have a thyroid or autoimmune

disease.

List the minerals and vitamins you would like to be tested i.e.

ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc and tell

the GP that you are aware that if any of these are low in the reference range,

your thyroid hormone cannot be properly absorbed at the cellular level until

whatever is low is supplemented. If you feel your GP will tell you there is no

association between low levels of vits/mins. then be ready for that one by

printing off the attached document citing just a few of many reference to the

scientific evidence to show that there is.

Ask for the results of all your blood tests to be made available

to you together with the reference range for each test done. You don't have to

give the doctor a reason why. A doctor is not allowed to withhold any

information that is in your medical notes from you under the Freedom of

Information Act.

Then ask for a referral to an endocrinologist of your choice.

Last, ask for your letter to be placed into your medical notes

and finish off by saying that you look forward to hearing from him shortly.

Keep the whole tone of the letter nice and light and friendly.

Good luck - but do think carefully about carrying on using T3

and the possible consequences.

Luv - Sheila

THYROID STIMULATING HORMONE *24.87 mIU/L (0.27 - 4.2)

FREE THYROXINE *11.9 pmol/l (12.0 - 22.0)

FREE T3 4.8 pmol/L (3.1 - 6.8)

They might well ignore this test result and want to do another one, as this was

organised for me by a private doctor. Since the test last week I have resumed

taking some T3. I presume a few days should be enough to get that out of my

system if they insist on a retest?

What other preparations should I make for visiting my GP? I must admit to being

nervous about it as I don't have much confidence in them. Also it is very

difficult to stand up for yourself when you have brain fog and are feeling

really rubbish. I could probably manage my illness better myself, but it would

be good to have a diagnosis because I have been ill for at least 21 years

already and won't always be able to afford to buy my own medication and pay for

private doctors.

1 of 1 File(s)

MINERALS AND VIT. TESTING.doc

[Guest guest]

Thanks very much Sheila. I thought the effects of the T3 would wear off after 2

or 3 days?

Yes, please send me your list of endocrinologists.

Miriam

> If you want a NHS diagnosis Miriam, I would not have started taking T3 with

such a high TSH. Taking T3 could reduce your TSH drastically and then you might

need to be off the T3 for a long time again in order to get your TSH to rise

again.

>

> Enclose a copy of the private serum thyroid function test results and say that

because of this, you would like to be referred to an endocrinologist of your

choice - if you want my doctors list, let me know and I will send it to you.

[Guest guest]

Miriam,

Why, if your doc doesn't treat you and you decide to go it alone, would you have

to pay for private doctors too?

I currently pay for my own meds (4 grains NT) and it works out at around £20 a

month.

I don't see any private docs, My doctor believes I am taking what she gives

me, so I get the annual blood tests done by the surgery. If I decided to do my

own annual blood tests privatly, it would cost in the region of £80 max.

I would stop the T3 well before any tests as its half life in your body is about

2.5 days according to Wikipedia. so if you take 40 mcg one day, then after a

week your body would still show levels like you had taken 5mcg....

http://en.wikipedia.org/wiki/Triiodothyronine

.

>

>

> They might well ignore this test result and want to do another one, as this

was organised for me by a private doctor. Since the test last week I have

resumed taking some T3. I presume a few days should be enough to get that out

of my system if they insist on a retest?

>

>

[Guest guest]

Miriam,

You must have private hospitals in Bristol where you can have your blood

drawn..... I go to the local nuffield hospital in Dorchester. They charge

me £15. and that's it, I don't feel obliged to pay for a private

consultation, with a private doctor.... Neither should you.

Money is tight, toughen up and just see the docs who are getting you better,

don't see them just to give them an update.... It's a job, they forget you as

soon as you walk out the door.

If you're on a low carb diet, you must be doing high protein.... have you tried

the protein shakes....? ( http://www.myprotein.com/uk/products/true_whey )

bit of a nightmare to navigate the site though..... Strawberry is good....

x

>

> This means the only way I can judge the correct levels of T4 and T3 are by the

Free T4 and Free T3 tests. I haven't found anyone who will take blood for the

test except for a private doctor here in Bristol, so I feel obliged to see them

occasionally and keep them updated. Also I am still seeing Dr P from time to

time.

>

[Guest guest]

Hi Miriam,

I live in Bristol and am new to this forum.

I needed some blood taken a few weeks ago to send off to Genova labs for a

thyroid screen so I phoned the Bristol Nuffield St 's Hospital and they

quoted me £38 just to take the blood sample for a thyroid screen.

I am also on a tight budget so luckily I managed to find a friend of a friend

who is a nurse who was happy to do it for me.

I'd just thought I'd let you know there is a place you can have blood taken

locally, even though it's not cheap!

Good luck!

x

<miriam_hinch@> wrote:

I haven't found anyone who will take blood for the test except for a private

doctor here in Bristol...

> >

>

[Guest guest]

Thanks, and . I did go to the Bristol Nuffield hospital once, but my

appointment was delayed, making it a nightmarish rush to get the sample to the

post office in time for next day delivery. By the time I added up the cost of

having blood drawn, and the actual test, it wasn't any cheaper than seeing the

private doctor. There is another hospital, the Spire, which I could try.

Where is the cheapest lab to get TSH, Free T4 and Free T3 tested? So far as I

can see the Genova Diagnostics Thyroid test costs £99 and is more comprehensive

than I need.

Miriam

> I live in Bristol and am new to this forum.

> I needed some blood taken a few weeks ago to send off to Genova labs for a

thyroid screen so I phoned the Bristol Nuffield St 's Hospital and they

quoted me £38 just to take the blood sample for a thyroid screen.

[Guest guest]

Hi Miriam,

Lab 21 charge £17.50 for each aspect... so £17.50 for Free T3, £17 for Free

T4 or £49 for TSH, T3 and T4 .... Here's the

link....http://www.lab21.com/ClinicLab/Services/HealthcareProfessionals/CLINICAL\

BIOCHEMISTRY/Thyroid.aspx

Acutally I think they can tell you where to get blood drawn as well.... I think

I saw something on their site......

How hard can it be? I'm going to have a look on utube.... after all, I managed

to give myself injections without dying.....

x

>

>

> Where is the cheapest lab to get TSH, Free T4 and Free T3 tested? So far as I

can see the Genova Diagnostics Thyroid test costs £99 and is more comprehensive

than I need.

>

[Guest guest]

Thanks, . I'll take a look at the Lab 21 website.

I do think it would be much harder to take your own blood than to give yourself

an injection. Although the nurse didn't seem to have any trouble finding a

vein, she did have trouble drawing out enough blood the last couple of times. I

wouldn't fancy trying to do that to myself as it was painful and left me with

soreness and bruises.

A friend of mine told me he met a surgeon in Mongolia who took out his own

appendix because he didn't trust anyone else to do the job properly. So, these

things are possible, but not necessarily recommended!

Miriam

> Lab 21 charge £17.50 for each aspect... so £17.50 for Free T3, £17 for

Free T4 or £49 for TSH, T3 and T4 .... Here's the

link....http://www.lab21.com/ClinicLab/Services/HealthcareProfessionals/CLINICAL\

BIOCHEMISTRY/Thyroid.aspx

[Ed]

[Guest guest]

Hi, you can get a pin prick test from lab21- think it used to be called Cambridge something or other. i had one done a few years ago now for TPOab test. Angel.

[Guest guest]

Thanks. I couldn't find it, but could possibly phone them to find out about it.

Miriam

>

> Hi, you can get a pin prick test from lab21- think it used to be called

Cambridge something or other. i had one done a few years ago now for TPOab

test.  Angel.

>

[Guest guest]

Good news! I now have an official diagnosis of hypothyroidism, free

prescriptions, and some thyroxine to try. I have 8 weeks on 25 mcg, then they

will do another blood test.

Not so good news is that the GP is already estimating I will probably need 75

mcg, and is obvious fixated on the TSH. Also, I don't know yet whether

thyroxine will suit me.

They have agreed to test ferritin, folate, B12 and vitamin D, but not the

copper, zinc or magnesium. I decided not to go in armed with all the papers

about low minerals, etc, as it seemed like using a sledgehammer to crack a nut.

I'll have to see how receptive this GP is to new information as time goes on.

Miriam

> It looks like I have finally got a TSH that might make my GP pay some

attention:

> THYROID STIMULATING HORMONE *24.87 mIU/L (0.27 - 4.2)

> FREE THYROXINE *11.9 pmol/l (12.0 - 22.0)

> FREE T3 4.8 pmol/L (3.1 - 6.8)

[Guest guest]

Hi Miriam, Progress at least! Doc may need reminding that most healthy folk have a TSH of around 1.0- some docs think that anything in range is OK, but one step at a time. Usual full replacment dose is 125 to 150mcg, so again doc may underestimating, but wait and see. > thyroid treatment > From: miriam_hinch@...> Date: Mon, 6 Jun 2011 10:15:50 +0000> Subject: Re: Blood test results after 6 weeks with no thyroid hormone> > Good news! I now have an official diagnosis of hypothyroidism, free prescriptions, and some thyroxine to try. I have 8 weeks on 25 mcg, then they will do another blood test.> > Not so good news is that the GP is already estimating I will probably need 75 mcg, and is obvious fixated on the TSH. > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Congratulations Miriam, I am delighted that at last, the NHS has

actually recognised that you do have the symptoms of hypothyroidism. I do hope

the thyroxine alone will work for you and that you are a good converter. If the

GP is estimating you are going to need 75mcgs T4, then why doesn't he start you

on that dose instead of wasting several weeks creeping up to that dose slowly.

Many doctors will start on high doses (not that 75mcgs is high) and then

decrease if necessary. Remember that your adrenals must be working well, and

that if you do have low levels of minerals and vitamins, these must be

supplemented before thyroid hormone can be utilised at the cellular level.

Don't rely 100% on what your doctor says, we have learned to our horror what

can happen by leaving our treatment to them.

Luv - Sheila

Good news! I now have an official diagnosis of

hypothyroidism, free prescriptions, and some thyroxine to try. I have 8 weeks

on 25 mcg, then they will do another blood test.

Not so good news is that the GP is already estimating I will probably need 75

mcg, and is obvious fixated on the TSH. Also, I don't know yet whether

thyroxine will suit me.

They have agreed to test ferritin, folate, B12 and vitamin D, but not the

copper, zinc or magnesium. I decided not to go in armed with all the papers

about low minerals, etc, as it seemed like using a sledgehammer to crack a nut.

I'll have to see how receptive this GP is to new information as time goes on.

[Guest guest]

Thanks, Sheila. I do feel relieved as I have been ill for 21 years now. It is

pretty terrible to have a diagnosis of ME/CFS when many people still think that

means it's all in your head.

I don't mind going rather slowly with the thyroxine as I want to make sure I

don't get any adverse reactions. If it seems to help, but the GP sticks at a

dose I think is too low, I could ask to see one of the recommended doctors off

the TPA list.

I am still keeping in touch with Dr P to get his advice about everything and

monitoring how things go.

Miriam

> Congratulations Miriam, I am delighted that at last, the NHS has actually

recognised that you do have the symptoms of hypothyroidism. I do hope the

thyroxine alone will work for you and that you are a good converter. If the GP

is estimating you are going to need 75mcgs T4, then why doesn't he start you on

that dose instead of wasting several weeks creeping up to that dose slowly. Many

doctors will start on high doses (not that 75mcgs is high) and then decrease if

necessary. Remember that your adrenals must be working well, and that if you do

have low levels of minerals and vitamins, these must be supplemented before

thyroid hormone can be utilised at the cellular

> level. Don't rely 100% on what your doctor says, we have learned to our horror

what can happen by leaving our treatment to them.