Re: Help please newly diagnosed

[Guest guest]

Hi

ne

There

is a lot to learn about hypothyroidism and you have to learn most of what you

need to know yourself because there are very few doctors who know very much

about how to diagnose and treat it. This is why we run this particular support

group and web site www.tpa-uk.org.uk

.. First thing I would recommend if it is at all possible is that you

change your GP to one who either knows about hypothyroidism, or is willing to

learn about hypothyroidism, or who would have the common sense to send you to

an endocrinologist, and one who specialises in hypothyroidism because your GP

is the cause of you feeling so very ill - which is quite appalling.

Did

your GP not tell you that it can take up to 6 weeks for thyroxine to be

completely absorbed by the cells - the effect does not happen overnight and also, your

prescription of 25 mcgs is a tiny dose - the average dose for sufferers of

hypothyroidism is between 125 and 150 mcgs levothyroxine with many people

taking much more, and some people being able to get their health back on much

less. You will NEVER feel well on 25 mcgs alone. The week you felt bad when it

was raised to 50 mcgs was probably a week when you generally felt bad because

of some other reason beside being hypothyroidism, and with such a high TSH -

your GP should have continued to increase your dose every 6 to 8 weeks 25 mcgs

until you reached a point where your symptoms disappeared.

You

need to be taking Selenium 200 mcgs daily with food and high dose vitamin C

(2000 to 3000mgs daily) to start with and you need to ask your doctor for some

specific blood tests to see whether you require further vitamins and minerals -

which you sound as if you will need being vegetarian.

First,

the one thing you should do immediately is to write a letter to your GP. Send a

copy of this letter to the Head of practice and ask that your letter be placed

in your medical notes. The latter is to ensure that should the doctor ignore

the contents of your letter and not refer you to a specialist in thyroid

disease and should your health become worse, she will place herself in a

position where her practice could be investigated.

In

the letter, list all of your symptoms and signs (signs are things that your

doctor or anybody else can see) http://www.tpa-uk.org.uk/symptoms_hypot.php.

Next, take your temperature for at least 4 mornings before you get out of bed

in a morning and before having anything to drink (you can buy a thermometer

cheaply at your local chemist - or if you have a friend or family member who

has one, ask if you can borrow it). Normal temperature should be 98.6, but if

yours is 97.8 or it could be a lot less, this is a sign that your metabolism

isn't working and a sign that you are not on enough levothyroxine. Next, list

all of the members in your family who have a thyroid or autoimmune disease

problem.

Ask

her to give you a FULL thyroid function test which includes TSH, Free T4, Free

T3 and a test to see if you have thyroid antibodies, especially as members of

your family suffer with hypothyroidism. Also, because there are a number of

conditions that go along with being hypothyroid that MUST be treated if they

are low in the reference range, ask for the following blood tests too: Ferritin

(stored iron), B12, Vitamin D3, Magnesium, Copper, Zinc and Folate. These tests

are VERY important, because if any of them are low, the levothyroxine you are

taking cannot be absorbed into your cells properly - and if whatever it is you

are low in is not supplemented, you will remain ill. Always get the results of

any blood tests you have had done together with the reference range for each of

the tests and post these results onto the forum. NEVER, NEVER allow a doctor

just to tell you that they are 'normal' because doctors do not know how to

interpret blood results for thyroid function. All they know is that if they are

returned within the reference range - they are 'normal'. It matters not to them

whether your results were at the bottom of the reference range, in the middle

or right at the top. It matters to us…

You

may be suffering with low adrenal fatigue and the NHS does not test for this,

they only test to see whether you have 's (your adrenals are not putting

out sufficient or any cortisol) or Cushing's syndrome (your adrenals are

putting out too high a level of cortisol) - they don't check for any shades of

grey in-between the two, and this is what many sufferers of hypothyroidism

have. There is a test (but expensive) you can get a test to check your 24 hour

salivary adrenal from Genova Diagnostics www.gdx.uk.net where you spit into a test

tube at 4 specific times during the day. You may be suffering with Candida -

and both of these conditions again will stop your thyroid supplement from being

absorbed.

Because

your TSH is high and because you are feeling so dreadful, write in the letter

that you are requesting you be referred to a thyroid specialist as soon as

possible. GP's are NOT specialists.

You

say you don't feel as ill as some in the group are - but if your doctor leaves

you suffering on 25 mcgs levothyroxine only, you are quite likely to become as

ill as some of us.

As

far as supplementing because of your vegetarian diet, have a look at the

Information Sheet for Vegetarians here - this gives the information you need http://www.vegsoc.org/info/vitmineral.html

Good

luck, and if you have more questions, do get back to us and somebody will be

along to try to give you an answer.

Luv

- Sheila

I have spent hours reading info on here and find it all very

confusing. I went to see my GP at the end of last year asking for an iron test

as I so tired all the time, hair falling out (although no bald spots yet)

restless legs and arms. Luckily for me she mentioned testing my thyroid at the

same time. My TSH came back at 9.7 and then 9.5 on the second test. They put me

on 25mcg of levothyroxine. I had about one week where I felt great then the

usual symptoms started again. I went back for a repeat blood test and my TSH

was 6.5. They put my levothyroxine up to 50mcg. After about a week I felt worse

than I had before. I was so exhausted and one day spent the whole day sobbing

whilst lay on the settee with my 5 year old and 2 year entertaining themselves.

The GP then put my levothyroxine back down to 25mcg. I still dont feel well

[Guest guest]

Thank you so much for that information. Im going to print it off. Can I just

ask one more quick question. When I next go for my blood test in September does

it matter what time of day I have the test? I take my levothyroxine first thing

in the morning. If my bloods are taken early morning will it make a difference

to the results.

Thanks again.

>

>

>

> Hi ne

>

>

>

> There is a lot to learn about hypothyroidism and you have to learn most of

> what you need to know yourself because there are very few doctors who know

> very much about how to diagnose and treat it. This is why we run this

> particular support group and web site <http://www.tpa-uk.org.uk>

> www.tpa-uk.org.uk . First thing I would recommend if it is at all possible

> is that you change your GP to one who either knows about hypothyroidism, or

> is willing to learn about hypothyroidism, or who would have the common sense

> to send you to an endocrinologist, and one who specialises in hypothyroidism

> because your GP is the cause of you feeling so very ill - which is quite

> appalling.

>

>

>

> Did your GP not tell you that it can take up to 6 weeks for thyroxine to be

> completely absorbed by the cells - the effect does not happen overnight and

> also, your prescription of 25 mcgs is a tiny dose - the average dose for

> sufferers of hypothyroidism is between 125 and 150 mcgs levothyroxine with

> many people taking much more, and some people being able to get their health

> back on much less. You will NEVER feel well on 25 mcgs alone. The week you

> felt bad when it was raised to 50 mcgs was probably a week when you

> generally felt bad because of some other reason beside being hypothyroidism,

> and with such a high TSH - your GP should have continued to increase your

> dose every 6 to 8 weeks 25 mcgs until you reached a point where your

> symptoms disappeared.

>

>

>

> You need to be taking Selenium 200 mcgs daily with food and high dose

> vitamin C (2000 to 3000mgs daily) to start with and you need to ask your

> doctor for some specific blood tests to see whether you require further

> vitamins and minerals - which you sound as if you will need being

> vegetarian.

>

>

>

> First, the one thing you should do immediately is to write a letter to your

> GP. Send a copy of this letter to the Head of practice and ask that your

> letter be placed in your medical notes. The latter is to ensure that should

> the doctor ignore the contents of your letter and not refer you to a

> specialist in thyroid disease and should your health become worse, she will

> place herself in a position where her practice could be investigated.

>

>

>

> In the letter, list all of your symptoms and signs (signs are things that

> your doctor or anybody else can see)

> <http://www.tpa-uk.org.uk/symptoms_hypot.php>

> http://www.tpa-uk.org.uk/symptoms_hypot.php. Next, take your temperature for

> at least 4 mornings before you get out of bed in a morning and before having

> anything to drink (you can buy a thermometer cheaply at your local chemist -

> or if you have a friend or family member who has one, ask if you can borrow

> it). Normal temperature should be 98.6, but if yours is 97.8 or it could be

> a lot less, this is a sign that your metabolism isn't working and a sign

> that you are not on enough levothyroxine. Next, list all of the members in

> your family who have a thyroid or autoimmune disease problem.

>

>

>

> Ask her to give you a FULL thyroid function test which includes TSH, Free

> T4, Free T3 and a test to see if you have thyroid antibodies, especially as

> members of your family suffer with hypothyroidism. Also, because there are a

> number of conditions that go along with being hypothyroid that MUST be

> treated if they are low in the reference range, ask for the following blood

> tests too: Ferritin (stored iron), B12, Vitamin D3, Magnesium, Copper, Zinc

> and Folate. These tests are VERY important, because if any of them are low,

> the levothyroxine you are taking cannot be absorbed into your cells properly

> - and if whatever it is you are low in is not supplemented, you will remain

> ill. Always get the results of any blood tests you have had done together

> with the reference range for each of the tests and post these results onto

> the forum. NEVER, NEVER allow a doctor just to tell you that they are

> 'normal' because doctors do not know how to interpret blood results for

> thyroid function. All they know is that if they are returned within the

> reference range - they are 'normal'. It matters not to them whether your

> results were at the bottom of the reference range, in the middle or right at

> the top. It matters to us.

>

>

>

> You may be suffering with low adrenal fatigue and the NHS does not test for

> this, they only test to see whether you have 's (your adrenals are

> not putting out sufficient or any cortisol) or Cushing's syndrome (your

> adrenals are putting out too high a level of cortisol) - they don't check

> for any shades of grey in-between the two, and this is what many sufferers

> of hypothyroidism have. There is a test (but expensive) you can get a test

> to check your 24 hour salivary adrenal from Genova Diagnostics

> <http://www.gdx.uk.net> www.gdx.uk.net where you spit into a test tube at 4

> specific times during the day. You may be suffering with Candida - and both

> of these conditions again will stop your thyroid supplement from being

> absorbed.

>

>

>

> Because your TSH is high and because you are feeling so dreadful, write in

> the letter that you are requesting you be referred to a thyroid specialist

> as soon as possible. GP's are NOT specialists.

>

>

>

> You say you don't feel as ill as some in the group are - but if your doctor

> leaves you suffering on 25 mcgs levothyroxine only, you are quite likely to

> become as ill as some of us.

>

>

>

> As far as supplementing because of your vegetarian diet, have a look at the

> Information Sheet for Vegetarians here - this gives the information you need

> <http://www.vegsoc.org/info/vitmineral.html>

> http://www.vegsoc.org/info/vitmineral.html

>

>

>

> Good luck, and if you have more questions, do get back to us and somebody

> will be along to try to give you an answer.

>

>

>

> Luv - Sheila

>

>

>

>

>

> I have spent hours reading info on here and find it all very confusing. I

> went to see my GP at the end of last year asking for an iron test as I so

> tired all the time, hair falling out (although no bald spots yet) restless

> legs and arms. Luckily for me she mentioned testing my thyroid at the same

> time. My TSH came back at 9.7 and then 9.5 on the second test. They put me

> on 25mcg of levothyroxine. I had about one week where I felt great then the

> usual symptoms started again. I went back for a repeat blood test and my TSH

> was 6.5. They put my levothyroxine up to 50mcg. After about a week I felt

> worse than I had before. I was so exhausted and one day spent the whole day

> sobbing whilst lay on the settee with my 5 year old and 2 year entertaining

> themselves. The GP then put my levothyroxine back down to 25mcg. I still

> dont feel well

>

[Guest guest]

>>>> Thank you so much for that information. Im going to print it off. Can I just ask one more quick question. When I next go for my blood test in September does it matter what time of day I have the test? I take my levothyroxine first thing in the morning. If my bloods are taken early morning will it make a difference to the results.

Hi ne,

Every time you have a thyroid blood test, you should stop your levothyroxine for at least 24 hours... so you would not take any thyroxine the day before the blood test nor on the morning of the blood draw. As soon as the blood has been drawn, you can take your daily dosage, but remember not to eat after that for at least one hour.

Best wishes,

[Guest guest]

>>>When I next go for my blood test in

> September does it matter what time of day I have the test?

Sorry, meant to add - early morning blood draw is best and most

convenient for stopping the levo beforehand plus taking into account not

to eat for an hour thereafter.

[Guest guest]

Thank you . Im glad I asked now as again no-one has told me that. That

may explain why my TSH had gone down last time even on such a low dose of

Levothyroxine.

ne

> > Thank you so much for that information. Im going to print it off. Can

> I just ask one more quick question. When I next go for my blood test in

> September does it matter what time of day I have the test? I take my

> levothyroxine first thing in the morning. If my bloods are taken early

> morning will it make a difference to the results.

>

>

>

> Hi ne,

>

> Every time you have a thyroid blood test, you should stop your

> levothyroxine for at least 24 hours... so you would not take any

> thyroxine the day before the blood test nor on the morning of the blood

> draw. As soon as the blood has been drawn, you can take your daily

> dosage, but remember not to eat after that for at least one hour.

>

> Best wishes,

>

>

>

[Guest guest]

>>>That may explain why my TSH had gone down last time even on such a low dose of Levothyroxine.

You're very welcome, ne. -Just to clarify ... I don't suppose that the TSH would have shown a relevant measurable difference, whether you had taken the pills or not. But taking levothyroxine just before a test would certainly influence your FT4 and to an even greater extent your FT3 .... which I don't suppose had been measured anyway.

However, just to explain.... as I understand it, although the TSH does fluctuate slightly throughout the day, the main reason why doctors (wrongly) put so much emphasis on this particular reading, is because it is (compared to the others) stable. As a general indicator, the TSH takes about 4-5 weeks to shift significantly up or down. Therefore doctors are generally satisfsied that a TSH is all that's needed to tell if a patient is now feeling "well" .... which is very wrong. The TSH is a pituitary measurement, and whilst often a good indicator for diagnosing (but not treating) Hypothyroidism, it has no proper bearing on how a person is feeling - not to mention that the norm ranges in this country are set much too high, courtesy of the BTA (British Thyroid Association).

The FT4, by contrast, fluctuates much faster. For example, taking the levothyroxine just before a blood test (as opposed to not taking it for about 24 hours+ before) will make a difference of about 10% to the FT4 reading, making it look more favourable than it really is.

The FT3 is very volatile. It has a very short half life (of about 7 hours) and measurements would be showing a completely wrong result if the thyroxine had been taken shortly before the blood draw. ... not that anybody on the NHS will be given this particular parameter. All you can hope for is TSH and FT4, and it is because of the possibility of getting an FT4 that it would be wise to stop the medication beforehand.

Best wishes,

[Guest guest]

Hello ne - you should be tested first thing so make an

early appointment to have your blood drawn. However, do not take any

levothyroxine for at least 24 hours before the blood draw as it can skew the

results. You can take all other medications though the same day. Take your

levothyroxine as soon as you have had it done. Have you considered taking your

levothyroxine when you go to bed. A study has shown that patients say they

sleep better and feel better throughout the day - many of our members do

this. It also allows you to take other medications containing iron or

calcium during the day without interference with your thyroxine.

ne - can you remember to delete most of the message you are

responding to please and leave just a small portion of what you are responding

to as others have already read the message and it is very frustrating for those

who opted to receive a Daily Digest or who read messages direct from the web

site - too much scrolling to do to get to the next message.

Luv - Sheila

Thank you so much for that information. Im

going to print it off. Can I just ask one more quick question. When I next go

for my blood test in September does it matter what time of day I have the test?

I take my levothyroxine first thing in the morning. If my bloods are taken

early morning will it make a difference to the results.

Thanks again.

[Guest guest]

Hi - I think what you are talking about here is the

length of time we are likely to feel the 'effect' of T3 in the body.

After about 6 to 8 hours, many of us start to feel a slump and this is why we

always recommend taking any T3 containing medication twice or three times

daily. When we reviewed the literature a few months back, all the

measured half lives for T3 in humans ranged from 1 to 2 days. A study done on rats

showed a half life of 8 hours. There was quite a discussion regarding this on

our LABGAB forum. Now we have the search facility back, you might be able to

find it. thyroid treatment-LABGAB/

Luv

- Sheila

The FT3 is very volatile. It has a very short half life (of about 7 hours)

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.392 / Virus Database: 270.13.64/2318 - Release Date: 08/21/09

18:06:00

[Guest guest]

>> Hi - I think what you are talking about here is the length of time> we are likely to feel the 'effect' of T3 in the body. After about 6 to 8> hours, many of us start to feel a slump and this is why we always recommend> taking any T3 containing medication twice or three times daily. When we> reviewed the literature a few months back, all the measured half lives for> T3 in humans ranged from 1 to 2 days. A study done on rats showed a half> life of 8 hours. There was quite a discussion regarding this on our LABGAB> forum. Now we have the search facility back, you might be able to find it.> thyroid treatment-LABGAB/> > Luv - Sheila> >>>> The FT3 is very volatile. It has a very short half life (of about 7 hours)<<<

Yes, sorry Sheila, as soon as I had pressed "send", I realized that the word "volatile" was the wrong one to use. I should have sent a correction straight after.... I meant it just the way you describe above - that we feel the effect of T3 only for a few hours....Love,