New member - plea for help

[Guest guest]

Dear Sheila

I am so happy to have found your website and forum. I was diagnosed as

hypothyroid in 2001 and have been on thyroxine ever since. As a blood test at

that time showed antibodies, I was told that I have Hashimoto's disease and that

I would be on thyroxine for the rest of my life. In 2006 I went to live in

France for three and a half years, and in 2007/8 became very hypothyroid even

though I was on 125mcg of thyroxine. I had a good doctor and he put me on

Euthyral, a combination of T4 and T3 (100/20). My condition rapidly improved and

I was very happy as I hadn't felt this well in the whole time I'd been on

thyroxine only. He said that my T4 wasn't converting properly to T3 and that I

should continue on T3 for the rest of my life. My TSH levels were slightly below

the normal range but he wasn't overly concerned about this.

A year ago, my current GP was concerned about my TSH levels (0.05) being below

the normal range and referred me to an endocrinologist. I had a bone density

scan as he said that I had a risk of osteoporosis, and this came back as good,

so he then told me that unless I reduced my medication I would be at a high risk

of having a stroke. I reduced the thyroxine to 75mcg, and have felt more tired

ever since. He said he was happy with my FT4 and FT3 levels, but not my TSH. In

November he advised me to stop taking T3 and told me that I didn't need it,

again making a big issue about the likelihood of having a stroke. I stopped for

about a week and felt dreadful. Brain fog and memory loss, slow reactions,

muscle weakness and needing to sleep for 10-12 hours a day. I continued to take

T3 again as my next appointment with him was not until the 24th of January.

Also, I care for my mother who has Alzheimer's and I cannot look after her if

I'm in that state. I stopped again for four days before the blood test was due,

felt awful again and continued on the T3.

I had a really terrible appointment with the consultant yesterday and he was

really annoyed with me for not stopping the T3. The blood test results were for

TSH only, he hadn't asked for a FT3 test, and so there was no change to the TSH.

He didn't believe anything I said to him, and just kept telling me that I should

stop taking thyroxine and T3 as I didn't need it and it was just a placebo. He

is going to be writing to my GP (he said this in a threatening manner) with his

advice. He told me that I wasn't special when I said that I had become

hypothyroid on thyroxine alone. He said he didn't want me to sue him if and

when I had a stroke, and he then discharged me.

Needless to say, I have been very upset about this, and any help or advice will

be greatly appreciated! I have booked an appointment to see my GP next Tuesday,

and I want to gather as much information as I can before then. I may have to ask

for a second opinion, and I really have to make sure that I don't see another

so-called specialist like this one. It also doesn't help that my previous GP has

not forwarded on to my surgery any of my medical files.

Many thanks, Maureen

[Guest guest]

He said that my T4 wasn't converting properly

to T3 and that I should continue on T3 for the rest of my life. My TSH levels

were slightly below the normal range but he wasn't overly concerned about this.

Sounds like a doctor who knows his stuff - if only we had more

of them.

He said he was happy with my FT4 and FT3

levels, but not my TSH.

Was that because the TSH was below the range? Doesn't he know

that for anybody taking any form of T3, the TSH will be at the bottom or below

the bottom of the range, and that this is quite normal

In November he advised me to stop taking T3 and

told me that I didn't need it, again making a big issue about the likelihood of

having a stroke.

Another doctor treating a bit of paper and not listening to his

patient and paying no attention to how she is feeling.

I had a really terrible appointment with the consultant yesterday and he was

really annoyed with me for not stopping the T3. The blood test results were for

TSH only, he hadn't asked for a FT3 test, and so there was no change to the

TSH. He didn't believe anything I said to him, and just kept telling me that I

should stop taking thyroxine and T3 as I didn't need it and it was just a

placebo. He is going to be writing to my GP (he said this in a threatening

manner) with his advice. He told me that I wasn't special when I said that I

had become hypothyroid on thyroxine alone. He said he didn't want me to sue him

if and when I had a stroke, and he then discharged me.

Another sad ignorant and arrogant doctor who obviously

specialises in diabetes and knows little to nothing about hypothyroidism. I have

never heard of anybody who had " become hypothyroid on thyroxine

alone " . I would thank him for discharging you because obviously, he is

quite unable to help you. I will send you a list of recommended doctors by my

members who will prescribe using some form of T3, either synthetic or natural.

This will be sent separately.

Needless to say, I have been very upset about

this, and any help or advice will be greatly appreciated! I have booked an

appointment to see my GP next Tuesday, and I want to gather as much information

as I can before then. I may have to ask for a second opinion, and I really have

to make sure that I don't see another so-called specialist like this one. It

also doesn't help that my previous GP has not forwarded on to my surgery any of

my medical files.

Telephone the Head of your previous practice and tell them to

send on your medical notes with immediate effect. Telephone also your local

Primary Care Trust so that they are aware too, and make sure you tell the

previous doctor that you have done this.

We will give you all the help and support you need Diane, but

meanwhile, go to our FILES SECTION accessible form the Home Page of this Forum

in the Menu, and click FILES. Scroll down the list until you see a folder

entitled' Information for patients' and in there you will find a document

entitled 'First visit to endocrinologist' and that will help you with your next

consultation, but this time, with somebody who knows about the functioning of

the greater thyroid system.

Meanwhile, I have attached a document showing why thyroid

hormone stops working and also another document listing references to show that

specific minerals/vitamins that are showing low levels stop thyroid hormone

from being fully utilised at the cellular level. You should ask your GP to test

these, and when you get the results post them here together with the reference

range and we will help with their interpretation.

Luv - Sheila

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4765 - Release Date: 01/25/12

[Guest guest]

Apologies Maureen, I forgot to add the attachments

Sheila

Needless to say, I have been very upset about this, and any help or advice will

be greatly appreciated! I have booked an appointment to see my GP next Tuesday,

and I want to gather as much information as I can before then. I may have to

ask for a second opinion, and I really have to make sure that I don't see

another so-called specialist like this one. It also doesn't help that my

previous GP has not forwarded on to my surgery any of my medical files.

Many thanks, Maureen

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4765 - Release Date: 01/25/12

2 of 2 File(s)

MINERALS AND VIT. TESTING.doc

WHY THYROID HORMONE REPLACEMENT MAY NOT BE WORKING FOR YOU.doc

[Guest guest]

About the medical files. I must point out that they are not sent directly from

one doctor to another, they go to a central point (In Kent it is Maidstone) and

from there they are sent on and it takes 6 weeks minimum and a lot longer most

of the time. Sometimes during this process they are lost!

RE: New member - plea for help

He said that my T4 wasn't converting properly to T3 and that I should continue

on T3 for the rest of my life. My TSH levels were slightly below the normal

range but he wasn't overly concerned about this.

[Guest guest]

Are they sent automatically? My GP's surgery doesn't have my notes prior to

moving here 5 years ago, no-one has ever asked for my medical history (either

here or at the last surgery), I wonder now if it's been lost...

I do hope not, I want to get a look at it at some point soon to see my old

thyroid results as my first test was 12 years ago, and I was a lot healthier

then.

Niki

>

> About the medical files. I must point out that they are not sent directly from

one doctor to another, they go to a central point (In Kent it is Maidstone) and

from there they are sent on and it takes 6 weeks minimum and a lot longer most

of the time. Sometimes during this process they are lost!

[Guest guest]

WOW Jen, such knowledge. Thanks so much, I honestly had no idea

that this is what happens. This explains a lot, but is rather worrying if your

doctor has no access to any of your previous history of diagnoses and

medications, or dosages.

Sheila

About the medical files. I must point out that they are not sent directly

from one doctor to another, they go to a central point (In Kent it is Maidstone)

and from there they are sent on and it takes 6 weeks minimum and a lot longer

most of the time. Sometimes during this process they are lost!

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4767 - Release Date: 01/26/12

[Guest guest]

I'm a practice nurse, that's how I know. I wonder how long this stupid practice will last. I mean why wouldn't they just be sent straight to the new doctor?? I expect it will all be on the computer soon so no need to shift notes. Allright until the computer breaks down and they lose them completely, which would be good in my case because the thickness of mine shouts HYPOCHONDRIAC !!

RE: New member - plea for help

WOW Jen, such knowledge. Thanks so much, I honestly had no idea that this is what happens. This explains a lot, but is rather worrying if your doctor has no access to any of your previous history of diagnoses and medications, or dosages.

Sheila

About the medical files. I must point out that they are not sent directly from one doctor to another, they go to a central point (In Kent it is Maidstone) and from there they are sent on and it takes 6 weeks minimum and a lot longer most of the time. Sometimes during this process they are lost!

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.1901 / Virus Database: 2109/4767 - Release Date: 01/26/12

[Guest guest]

Thanks very much for this Sheila. I have a lot of reading to do now, but it's

very empowering! It also makes me realize how fortunate I was with my French

doctor as he was very thorough with testing me before I was put on T3. He wrote

a letter just before I came back to the UK saying that I needed to continue

taking T3 for life.

I've now had three doctors and a professor of endocrinology tell me that I will

be on thyroid hormones for life, so it seems ridiculous that this new consultant

can tell me I shouldn't be taking thyroid hormones as I don't need them and that

my thyroid is working! And this based purely on my TSH test....

Maureen

> Needless to say, I have been very upset about this, and any help or advice

> will be greatly appreciated! I have booked an appointment to see my GP next

> Tuesday, and I want to gather as much information as I can before then. I

> may have to ask for a second opinion, and I really have to make sure that I

> don't see another so-called specialist like this one. It also doesn't help

> that my previous GP has not forwarded on to my surgery any of my medical

> files.

>

> Many thanks, Maureen

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.1901 / Virus Database: 2109/4765 - Release Date: 01/25/12

>

[Guest guest]

Thanks for letting me know about this . I have been with this surgery for

two years now so I am amazed it has taken this long! I just hope that they

haven't been lost. Especially as the consultant doesn't believe a word I'm

saying...

Maureen

>

> About the medical files. I must point out that they are not sent directly from

one doctor to another, they go to a central point (In Kent it is Maidstone) and

from there they are sent on and it takes 6 weeks minimum and a lot longer most

of the time. Sometimes during this process they are lost!

[Guest guest]

Hi there, and welcome. first look in our files on the main site and look up the one which states that below the range results are alright.second go to = www.labtestsonline.org.uk and look for the file on reference ranges. which you print out these and show your doctor that he is wrong. these tests have reference ranges not normal ranges. you are normal when the results for the FT3/FT4 are in the top or near the top of the range. don`t let this doctor tell you what your body needs. if he can`t be bothered to help you stay well then change him/her.ask sheila for a list of good doctors which will at lease listen to you. also the TSH test is a poor marker for hypothyroidism as it can be anywhere in the

range. angel.

[Guest guest]

Hi forgot to say to look up a file from ingenta connect about the T3 and strokes called low T3 in patients with strokes.this should make your doctor sit up and take notice. Angel.

[Guest guest]

Maureen, you need to find a doctor who cares and knows that once

you have been diagnosed as suffering with hypothyroidism you have to take

thyroid hormone replacement for the rest of your life. This endocrinologists

sounds dangerous with his lack of knowledge.

For anybody taking thyroid hormone replacement, whether on

T4-alone, T4/T3 combination, T3-alone or natural thyroid extract, their results

will be in the normal reference range because the tablets are working. If

you stop taking your thyroid hormone replacement, the TSH will rise because the

pituitary will be secreting more TSH to tell the thyroid to start secreting

more thyroid hormone. Check your doctor out on Google and I bet his specialty

is in Diabetes, and not thyroid.

Luv - Sheila

I've now had three doctors and a professor of endocrinology tell me that I will

be on thyroid hormones for life, so it seems ridiculous that this new

consultant can tell me I shouldn't be taking thyroid hormones as I don't need

them and that my thyroid is working! And this based purely on my TSH test....

Maureen

[Guest guest]

You can actually make your own enquiries where they are stored. Ask the GP where the notes are stored in your area and you can contact the dept yourself but your Gp's receptionist can do it...should do it if you ask!

[Guest guest]

What would worry me greatly is that if something happened to me

tonight that warranted immediate admission to hospital, that there is no

medical history on me for a doctor to check through. That is really scary.

Jen, did you receive my private message sent first thing this

morning?

Luv - Sheila

You

can actually make your own enquiries where they are stored. Ask the GP where

the notes are stored in your area and you can contact the dept yourself but

your Gp's receptionist can do it...should do it if you ask!

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4770 - Release Date: 01/27/12

[Guest guest]

Thank you for your advice angel.

I have tried several times to read documents in the Files section " TSH-what

affects the levels of TSH " and I have not been able to access any of them. Every

time I click on the document logo it goes to a page that says 'Document not

found.' I haven't had this issue on any of the other Files documents, many of

which I've managed to download and print out. Do you have any idea why this is

happening?

Many thanks,

Maureen

>

> Hi there, and welcome. first look in our files on the main site and look up

the one which states that below the range results are alright.

> second go to = www.labtestsonline.org.uk and look for the file on reference

ranges. which you print out these and show your doctor that

>

> he is wrong. these tests have reference ranges not normal ranges. you are

normal when the results for the FT3/FT4 are in the top or near the top

>

> of the range. don`t let this doctor tell you what your body needs. if he can`t

be bothered to help you stay well then change him/her.

> ask sheila for a list of good doctors which will at lease listen to you. also

the TSH test is a poor marker for hypothyroidism as it can be anywhere

>

> in the range.  angel.

>

[Guest guest]

Hi there, ask sheila if she can send some files to you as attachments. angel.